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.
Monday, August 14, 2017
An MRI with contrast.
They're looking for cancer.
Because in February, I had one good scare, and the result of that was that based upon the report from the Radiologist, my Chemo Doc ordered an MRI with contrast, for August.
August has always been a difficult month for me, for lots of reasons. But the biggest reason being that on August 16, 1988, the summer before my junior year in high school, I was riding my bike and hit by a truck that dragged me about 15 feet on the asphalt. I am fortunate and thankful that I suffered no breaks or sprains. I didn't hit my head, and this was before there was a push for bike helmets. I recognize how lucky I was (and am). But the road rash that was created ran down my right leg, from my upper thigh, all the way to my ankle. The therapy and healing process was excruciating, both physically and emotionally.
Before today's MRI, I know they are drawing labs from my chemo port, because I still have that mother lovin' thing in, and then they are going to inject me with some bullshit that, if I have cancer, is going to cause the cancer cells to light up.
I know I'll go in and get topless, remove all jewelry, absolutely no metal on my body, and then I'll put on a gown with the opening in the front and I'll lay on my stomach, with my face down in a cradle, and the tech will probably be a female tech and she'll be responsible for placing my breasts into the dedicated breast coils, which are also known as holes, and that I have to be touched by yet another stranger and she'll wear rubber gloves that will probably be pink, because god forbid you ever forget that you're a breast cancer patient. And absolutely nothing about this is fun, or sexy, or makes me feel like a woman. It's actually super stressful, and a little bit humiliating.
And then they'll insert me and the table into the MRI machine. Maybe they'll let me plug my phone into their system, and cue up my own music, like the cool techs when I had the PET scan with contrast right after I was diagnosed with breast cancer, and we all listened to U2's Songs of Innocence.
Maybe the liquid bullshit they're going to inject me with will not seep out and run down my breasts like it did for a sister breast cancer survivor who shared her experience a long time ago, before my own MRI with contrast was ordered.
So knowing this was coming, I've spent the last several days taking the best care of myself as I possibly could. Building strength and positive energy. Surrounding myself with people who love me and whom I love very much.
Wednesday I took Isaac for a check-up and x-rays on his arm. He's been out of the cast for a couple of weeks, and in a removable splint. The x-rays showed that the arm is mostly healed. Mostly. Basically there's a little lip on one of the bones and he has some restrictions with his arm for another couple of weeks, but doesn't have to wear his splint. He is permitted to swim and play soccer, but he's not permitted to hit or block with his right arm at Hapkido. And absolutely no wrestling with his brother, because his brother weights more than twice what he does.
See what I did there? Doctor's orders, until the next x-ray, which is currently slated for Sept 19, absolutely positively, no wrestling with your brother. I'm the only one who can raise my voice and yell at them to stop wrestling, which creates a tremendous amount of stress and puts a lot of pressure on me. Dr. Dean said, no wrestling. Jesus, you don't need to start third grade with a brand new cast, child. Mommy for the win.
After the doctor's appointment, we went downtown for pizza and ran a few errands, including finding a cool sketchbook for him. It had been a really long time since I have been able to spend some quality time alone with Isaac, and it was much needed by both of us.
Thursday I took the boys to the lake for the first time all summer. Randy needed to rest his voice from his procedure on August 2. On our way out 101, we watched a bald eagle launch off of an anciently tall tree and take flight, soaring over us and allowing the boys to watch it through the panoramic moon roof in the Highlander; a good omen. We met up with Momma Christine and her boys, and we were there for about 5 hours, catching up on the important things and making plans for the future. My boys have been wanting to swim out to the log and jump off of it for the past couple of years, so whenever we go to the pool, we've been working on jumping off the diving board and swimming to the side, which is level one. And the Olympic Platform Diving is the Boss Level, just so you have an idea of what we're dealing with here. There's a large range of levels for diving, but I won't go into that here.
Anyway, thank the Goddess for Momma Christine always having a safety net because she had life vests, and the boys felt ok to swim out to the log and jump off with life vests. Totally reasonable. I swam out there with them, in my new Wonder Woman swimsuit, which was a gift from Kate and Emily, and I pulled a flotilla of rafts with four boys who swam-floated...you know, like you do...and Momma Christine. She provided the life vests, I provide the transportation out to the log; that's the definition of teamwork.
It's empowering to be that strong of a swimmer in a glacier-carved, and fabled bottomless lake which really and truly is cold enough to take your breath away. I know now why the Master swimmers don wet suits when they swim in this lake. Not that I swam across it, I'm not at that level, but swimming out to the log a couple of times, and jumping off the log, and helping the boys to climb up that log and jump off that log...took a lot of my energy, or perhaps I gave a lot of my energy. Regardless, it was an invigorating and empowering experience. All of it. We even had our first ever stop at Granny's Cafe for ice cream on the way home. Yup. First time ever. It was delicious and even had two pleasant surprises of bumping into old friends while at Granny's.
Friday, a power yoga class with a young woman who led a beautiful class and included Warrior II, side angle, triangle, and even fallen triangle, providing power and strength in the shoulders, legs and core. These poses helped give me a strong foundation, as well as courage and strength to head into today's MRI. It was one of those classes that the instructor says what you needed to hear, at that particular moment, and left me feeling empowered and thankful that I was able to take this time for myself.
Saturday a 2-mile walk with an old friend along the Olympic Discovery Trail, through the woods with the green summer canopy overhead, and eventually out to the Strait. It had been entirely too long since I was able to walk with her, and we were able to catch up on important stuff, and making plans for the future. We enjoyed the view of ocean, the sound of the surf, and smell the fresh salty air. We figured out we'll be friends seven years come January, when I started at the dojang. We marveled at the unique health changes, and challenges, we've each gone through during that time.
I came home from that walk and cleaned out both freezers, throwing away a lot of long-forgotten processed foods. The extra freezer was growing a few glaciers and so I took it outside and hosed it out. You know...like you do.... And vowed that this really does need to be the last time for this because defrosting a freezer drains a lot of my energy that can be spent doing other things that are healthy...like sewing or writing. Or playing video games with my kids, like we did on Sunday as a family.
Today after my MRI, my friend Florence and I are having lunch. She is meeting me at the hospital, before the test. Speaking from experience, it's really nice to have a friend be there before and after. Seeing a familiar face of a person who loves and supports me and my family makes all of this a little easier.
Distractions and support are important.
Because today there's a test.
I'm hoping that this August is easier for our family than the previous two have been. And the ones in years past have been.
I'm cautiously optimistic that when Randy and I go see the new-to-us Medical Oncologist on Thursday for the results of today's MRI with contrast that the doc says something like "your boobs are both totally awesome!" but that's not very professional. So I'm hoping he says something similar to the news my husband got a couple of weeks ago, when the Lady ENT said "there's no evidence of cancer."
That would be really lovely.
And hopefully turn my attitude about August around.
Sunday, July 23, 2017
Randy wasn't able to have anything after midnight. No food. No water. No gum or mints. They really don't even like you to brush your teeth, just in case you swallow a little bit of your own saliva and/or toothpaste. They aren't fucking around.
On Thursday afternoon, the day before surgery, we headed over to the Emerald City, after our Kid Sitter, Ms. G., arrived to take care of the two-legged children and the four-legged child. She's awesome and incredibly brave because she agreed to spend the night at our house. She's been with us for a while; she volunteered a lot of her time for us last summer when Randy was going through his cancer treatment. The boys worship her. We are so thankful for her. We can't leave our trolls with just anybody. As a mom of a child who has seizure disorder who is medicated twice daily with three different pharmacological drugs, two of which are given to control seizures, and one of which is given to induce sleep, we're pretty particular about who we let provide care for our boys. And this was the first time we'd left them for an overnight with a sitter in our home. Last summer, when my husband was going through tonsil cancer, and the summer before when I was going through breast cancer, the boys stayed with our close friends, Momma Christine and/or Momma Bonnie and their families. So, leaving the boys at home with a sitter for us to go to the city for an overnight with a surgical procedure the next morning, given Randy's health history and the fear that he was going to seize in the operating room, and if he did that meant he was spending the night in the hospital, so it could be that she was going to be with them for two nights...this was a big fuckin' deal.
The drive east from Port Angeles was perhaps the longest drive I've ever had going towards Seattle, and not simply because it was summer and surgery was looming. Living on the Peninsula means having to drive. But this was different. We caught the Hood Canal Bridge open for marine traffic, and there was an accident at the intersection just before the bridge on the Jefferson County side. Seriously?! So it was a double whammy, at the same spot, before even leaving the Peninsula. Through all of it, Randy did a great job driving.
|Ferry ride to downtown Seattle|
After checking in, my husband and I walked through the vast waiting area that had semi-comfortable looking couches and chairs. I chose a pair of large, high-backed blue chairs with a narrow, but plain wooden table in between them, set down my 16 ounce white chocolate Americano, sat down, and pulled out the lap top. Because I'm not gonna just sit there for 90 minutes, and it's rude to leave and go shopping or some bullshit when your husband is in surgery. Right? Besides, the only thing open, besides Starbucks, is McDonald's (never!) and Bartell Drugs (later, when he's through surgery and in recovery. Because: chocolate.).
Anyway, so he goes back and they prepped him and then the nurse came to get me in the waiting room so I could keep him company. We met the anesthesiologist who was very kind and very thorough in reviewing Randy's health history. Based upon our conversation with him, he wasn't entirely sure Randy had a seizure last summer...but we all agreed there's no point in speculating about something that happened over a year ago. We both felt comfortable with the anesthesiologist putting Randy to sleep for this surgery.
Then the Lady ENT came in. I've only ever met her via FaceTime when Randy goes over to see her, so this is really the first time we've been in the same room and met formally. And she is lovely. And she's smart. And she's just gonna laser some warts off of my husband's vocal cords. She does this kinda thing a lot.
I head back out to the waiting room. And wait. And write. And dork around with my phone. And get up to pee like 12 times because my anxiety is so high. And they have free Starbucks in the surgery area waiting room, but I'll drink my water thanks.
And about 90 minutes later, the Lady ENT comes out. She's sad. Disappointed. She had to stop the surgery.
Wait. What? You didn't laser any warts off? I mean....
No, I'm sorry I didn't. Your husband has a very narrow passageway, and I need a smaller scope in order to access his vocal cords.
I know, I thought so too. I tried several times, with several different scopes, but was unsuccessful.
I know the real estate in his throat is limited because of the breathing tube the anesthesiologist has to use. Was that a factor?
Partly. However, but most of it is because of you husband's anatomy. It's narrow, and so I need a scope that is basically a smaller gauge so that I can get to the papilloma on his vocal cords.
So I had to stop the surgery because had I continued, I would have done harm.
Thank you for following the Hippocratic Oath. Is he ok?
He's ok. He's in recovery and you can see him soon. I'm so sorry. In my twenty years of practicing medicine, this is the second time this has happened. I feel badly that I wasn't able to help him in the way I anticipated.
Wow. So, it's a pretty rare thing?
But of course it happens to my family.
I know you guys have a lot of medical issues. And I'm sorry for everything you have on your plate. Please know I am as disappointed and frustrated as you are.
And as he will be.
I'll need to see him on Wednesday for the post-op.
Why? You didn't really operate.... I mean, not to be disrespectful.
No, you're right.
I mean...for us to get to the city and be here today took a lot of coordination for our kids. I know you know we have a child who has epilepsy and autism, but our 8-year-old has a full arm cast because he fell off the monkey bars and broke both his radius and ulna the week before school was out for the summer.
Yeah. And he's in arts camp next week, and he's really looking forward to going. So for us to be here on Wednesday for a post-op when there was no op.... Do you really need to see him? Or can we take a step back from this and perhaps have a conference call instead?
Yes. There's, you're right, there's no need for you guys to make all of the arrangements you have to and travel when really it's going to be such a quick visit. We can talk on the phone on Tuesday. I'll have my office call you this afternoon to set up a time.
Thank you so much. For everything. Really.
You're welcome. He'll be in recovery for about an hour and then you can go back and see him. I'll stop by and talk with both of you before releasing him, but he probably won't remember a lot of what we discuss, because of the anesthesia.
Ok. Thank you, Doctor. I very much appreciate your compassion and dedication to my husband and my family. Thank you for your support.
It was everything I could do to not hug her.
So instead, I went pee for the 100th time, and then left the Surgery Center. I made a quick stop at Bartell's for some smoked almonds for me to eat on the way home, and some chocolate (for the kids! And me. Because I needed to do something nice for myself, so I chose chocolate. Duh!). I grabbed most of our stuff from the hotel room, walked it down the street to the parking garage and left it in the Highlander, then back to the hotel, grabbed the rest of our shit, checked out, had a wonderful interaction with a blind woman on the street, and went back to the Surgery Center, who was calling me to let me know that Randy was waking up. Dammit, sometimes I have awesome timing!
Anyway, when I went back to see Randy, he was pretty loopy from the anesthesia...you know...like you are...and he wasn't particularly happy. Which is totally understandable.
Once he was feeling like he could get going, I asked for a medical pass for the ferry so we could be assured that we would get on the next boat home, we got our shit together, which included lots of packets of saltine crackers and a couple of vomit bags, I got the Highlander, drove back to the Surgery Center and met him and the nurse in front of the building, because they wheeled him out in a chair, which is standard. I asked what they do with people who don't own a car, the nurse said they usually call a taxi or take a bus. Jesus. Can you imagine getting out of surgery and getting on a bus? I'm thankful we have a reliable and comfortable vehicle to drive home in.
We caught the ferry in the nick of time, and were both starving, but ferry food wasn't happening, and so we stopped for something at Central Market in Poulsbo. The soup bar was a welcome sight. So were the fresh flour tortillas for tacos the next night. Nothing like meal planning on the fly. We'd talked, and Randy felt like homemade re-fried beans was something he could swallow without a lot of pain.
The ride home was largely uneventful. It was a beautiful day. Traffic was pretty light, considering it was a Friday afternoon in the middle of summer, and we were heading out to the Peninsula. The boys and the dog were happy to see us, and we were happy to see them! Ms. G. said they did great. The boys and Ms. G. all loved their chocolates!
So we're on for this week. But I'm not telling you when, exactly, because I suffer superstition. And I'm hoping that since this is the third time we've scheduled this surgery, and they say things come in threes....
Also, I have no details worked out yet. I have things brewing, but nothing is for sure. Child care. Dog care. Overnight in the city. Again. The A Team is on high alert, and for them, I have eternal gratitude.
I'm trying to see the good...but this post has gone on entirely too long. And I'm Jabbed Out!
|Bus ad; when's WA DOH & AG going after Big Sugar?|
|You can always tell the tourists, because they look up.|
|No idea what these buildings are, just a cool shot.|
Friday, July 14, 2017
Of course, some cultures believe that epileptic seizures are caused by which craft and malevolent spirits, and this is also something I've not taken lightly. Sometimes I have to conjure up amazing spells to get him to not have a meltdown. And I reckon that all parents wonder if their child is possessed at least once in a while.
He continued to look me in the eye, and because of his autism, eye contact doesn't come easy for him. I knew he was serious.
That my biggest fear is that my breast cancer will return?
That his Dad's tonsil cancer will return?
That something will happen during his Dad's upcoming surgery that will negatively impact our lives forever?
That he'll have another seizure on the operating table?
Will the highly trained, very skilled, and wonderfully caring Lady ENT slip and whoops Daddy doesn't have the ability to talk again? Ever.
That we'll be in a fatal accident going to or coming home from the surgery in Seattle?
That my son's epilepsy will end up causing his death? In his sleep? Sudden Unexpected Death in Epilepsy is a real thing. And it really scares me. Really really fucking scares me. Easily top five in my worst fears.
And then there are the state of the world fears.
The fears that some people see my son as a burden on the system. Because he has intellectual disabilities, he's seen as "less than," and somehow not deserving of love and acceptance. Will they come take him away? Lock him up in a camp with other people who are seen as "less than"? As a person of Jewish decent, the whole "camp" thing leaves a bad taste in my mouth. Maybe that's why I haven't ever registered my kids for camps during the summer.
We've had internment camps in America before. We locked up the Japanese during World War II. What's to stop it from happening again? What's to stop them from taking the people who are autistic? Or epileptic? Or people who live with any disability? Or people who have had cancer? Or have a different skin color?
Will he be thrown away by a society who now thinks that a college education, and having an intellect, is bad for America? What does that mean for my career? For my husband's career? What does it mean for our health insurance? And didn't the Senate vote take place today? My entire family is a pre-existing condition. Did it pass? I heard they didn't have enough yea votes going in...but I don't know the outcome. And it's important. Because eventually, my kid will probably end up on Medicaid. Right now, under the Affordable Care Act, we can keep him on my husband's insurance until he's 26. Thank you, Mr. Obama, for that one. Thank you for not permitting insurance companies to charge us more because we have so many pre-existing conditions and putting life-time limits on how much money my family will have to spend on all of what we deal with. Thank you.
The fear that all of that could be gone is truly terrifying for me.
Dishes in the dishwasher. Counters and table wiped down.
"What are your worries, Momma?" he asked.
"I don't know, honey. What are your fears?" I asked him.
"I'm not afraid of anything Mom," he said with confidence.
"Well, that's great, Nathan!" I said in a supportive tone.
"But, Mom, what do you worry about?" he asked again. I know he's persistent. His brain gets stuck in a loop and he will continue to ask the question unless I answer him.
"I'm worried that...the garden needs to be watered. Would you like to come outside with me and help me water the veggies?"
"YEEEESSSSS!" He yelled. "MOM! WE NEED TO CHECK MY BROCCOLI!" he continued to yell, in a very excited way. He loves broccoli. Being outside, connecting with the food he chose to grow in his raised garden bed, the water, the sound of the birds, the sun shining. All of this helped calm both of us down.
Monday, July 10, 2017
|Watering his garden with a cast? Sure.|
Four weeks ago, when my 8-year-old broke both bones in his right forearm on the monkey bars at school...with only 7 days to go before school was out for the summer...I had to make decisions about reasonable risk. He is not permitted to be around water...but the garden needs to be watered...and he planted his beans, peas, and lettuces before he broke his arm. So I gave him the hose. Reasonable risk. What could go wrong? I mean, his brother isn't even outside.
This is a child who is incredibly independent. In my conversations with other moms of children with special needs, of those who have a younger child who is neruotypical, the neurotypical child is incredibly independent, too. So, I know we're not unique in that.
But what is amazing about this kid, who was taking a reasonable risk when he was at school swinging on the monkey bars during recess, is that when he was ready to stop using his training wheels, he told me so. But I wasn't ready for no training wheels. I mean, at the time he was 4, so, no, your training wheels are staying on, little dude.
However, Sir Isaac isn't one who backs down easily, (I have no idea where he gets this from....) and went into the toolbox, got a pair of pliers, and started taking off his training wheels. Ok. Fine. Let's do this.
Also, when he wanted shoes with shoelaces, I told him he was going to need to learn to tie his shoes, and sure as shit, without more than me and his dad showing him a couple of times, he was tying his shoes proficiently within 24 hours. He's brilliant. Obviously.
So, here's the hose. Go water your garden. Thanks for helping. Be careful. Have fun. You are taking a reasonable risk, my child, by holding the hose with your left hand and keeping care to not spray the water in the direction of your right arm.
No, you may not spray your brother. I want to, too. Believe me. When your cast is off, you can spray him all you want. We both will. And thanks for helping me grow some deliciousness in our garden.
Thursday, June 29, 2017
But when the doctor said no, he meant no. No hiking, no biking, no scooter, no jumping on the trampoline.
So, no. No you won't.
And no wrestling with your brother.
I know you want to.
Taking a shower and covering your cast with a garbage bag is one thing. But going to the a body of water, or moving water. No. No garbage bag. No cast covers. I mean, your range of motion in your shoulder is good, but...no. No is no.
The lake will be there. The mountain will be there. The strait will be there. This is a temporary problem. Those places will always be there. We can go when your cast is off. Hopefully at the end of the July.
Let's go water the garden. I'm open to you watering with the sprayer set on "soaker" as long as you use your good arm, and you absolutely, positively, keep the water pointed away from you.
And your brother can't be in the garden at the same time. Because obviously. That's a recipe for disaster. And because there's a no in me.
There's a lot to do around the house. Let's check the Summer Rules list!
We can read. You guys are participating in the Summer Reading Program, so we get to read a LOT this summer! Because we may win the whale watching tour! You never know! You can't win if you don't read!
We can do laundry. I'd still have to do laundry if my arm was broken. Shit, I was going through chemo and doing laundry. I was at the boss level of disease and still running a household and teaching online. So, I think you can put your clothes away. You know, the ones I folded for you. Yeah. Those. Both of you. I know you've got two good arms, big dude. Get it done. Both. Of. You.
Oh! And if we assemble the deck box that we purchased like two years ago that's been sitting on the deck in a cardboard box...yeah that one! You'd check off like the rest of your list if we did that!
Because we gotta assemble the deck box, then we'd get to clean off the deck, which I'm open to trading that in for ___Clean Up One Room.
And you wouldn't have to play outside, because godforbid you play outside. On a beautiful 66* PNW summer day. Instead, we'll assemble the deck box outside! How brilliant is that?
And you guys would check off ___Made/Built Something Creative ANNNNDDD ___Helped Someone In The Family at the same time! How awesome is that?
Ok. So, there's a yes in me for computer time if you cooperate and are mostly nice to each other and me.
|They really did help me! (350 lb. wt. limit)|
|Back deck, after|
Sweeping too? Yes, please! Great idea!
Thank you both for your help.
Yes, boys, you earned computer time.