Dear Santa

Dear Santa,

Thank you so much for stopping by our table yesterday at iHOP and for your willingness to spontaneously take a picture with my boys! They were really quite excited to see you! As a human services person, I really appreciate what you're working on for the Marine Toys for Tots Foundation here on the Olympic Peninsula.

We don't really go to restaurants much, because my older son is on the autism spectrum and has a lot of sensory issues: strangers, too much noise, many different smells and bright lights tend to overwhelm him. He has a hard time regulating his body and "acting normal" in public. Add the holidays and the lights and the snow we've been having and a major surprise seeing you--I'm just thankful his head didn't explode at that very moment! He's been known to get pretty loud, because he has a hard time controlling his impulses.

I know he physically looks like he's 13-years-old, but he's chronologically only 10-years-old. My son has several developmental disabilities; the myriad testing he's been through, both at school and through Seattle Children's Hospital, put him, developmentally, at about 6-years-old. His 7-1/2 year-old brother is ahead of him developmentally; my older son will likely not catch up. I know you don't know this, but I do, and that's why I'm writing you this letter.

You see, Santa, when my husband and I each stood up yesterday to let our boys out of our respective sides of our booth, all of us hoped for a "normal" encounter with you. Each time we're out in public, we take a risk. It's a reasonable risk, I mean, I want my children to know how to act in a public setting. But it never occurred to me that you, Santa, would pull my son's Bite Saber out of his mouth.

One of the things I'm trying to teach my children is about consent. You reached up to him, pulled on the string, and pulled a comforting object out of his mouth, without his consent. Not cool, Santa. Not cool at all. Would you do the same to a toddler who had a pacifier? You may not agree with the parent letting their child have such an object, but is it your place to make that decision?

Also, you invaded my child's body space. His bubble. My son has body space issues in that he isn't aware when he's standing close to someone. Is he too far away from them? Or too close to someone? It's called vestibular sense. You are probably aware of where your body is in relation to other people or objects. But my son, he doesn't get this at all; my husband, the team of teachers my son has at school, and I are constantly trying to teach this unwritten etiquette to my son.

My son also has a rare form of epilepsy, and has frequent, rapid seizures each day. Don't worry, he's medicated, but he still seizes. When you pulled that Bite Saber out of his mouth, he may have had a seizure, but you didn't know because his seizures only last about 2 seconds. He may not have known you pulled his Bite Saber out of his mouth. But I saw you, Santa. And it seemed unnecessary for you to do what you did.

Now, I know that I'm an over-protective mom. And I know that my son has a slower reaction time. But I know that you invaded his space just before I snapped the picture of the moment he was so incredibly happy to see you. Guess what, I don't care that he's chewing on a Bite Saber. I don't care if it's in the picture. His Bite Saber helps him release anxiety. Why did you pull it from his mouth? What do you care? Why did his chewing on what is essentially a way for him to stay calm bother you enough to take it from his mouth? I mean, you're Santa. Aren't you accepting of everyone?

And I mean, you have a PIPE in your mouth, for fuck's sake. So, the hypocrisy of the action you took is a little lost on me. I'm confused. Why is it ok for you to have a little something that brings you peace and comfort in your mouth, but not ok for my son? What would happen had I done the same with your pipe?

After the Bite Saber was pulled, but before the whisper occurred....

Not to mention the fact that I was the Tobacco Prevention Queen for Clallam County Health and Human Services before my kids were born and I know that, according to the Master Settlement Agreement, the use of cartoon characters promoting tobacco products is banned. AND, according to Washington State law, smoking is banned in public places. Not that you were ACTUALLY smoking. When I worked in Arizona, we said that smoking is a "tumor-causing, teeth-staining, smelling, puking, habit." That was back in the mid 1990's...and of course, today, we know using nicotine is an addiction, and needs to be treated accordingly. But, you were promoting a the use of tobacco, there, Santa, and I really think you should ditch the pipe.

But then...then, you bent down and whispered something in my son's ear that was incredibly quiet, and I just...something didn't sit quite right with me. It was the kind of thing that I thought about on and off throughout the day as my family ran errands, including buying a few presents for our faithful dog, and getting almost all the way through Costco my son had a meltdown.

I like to think you said something kind and encouraging like, "you are getting to be so big and don't need that chew toy!" Or maybe even, "what's that thing you were chewing on? Does it help you?"

And each time I thought about and wondered what you so secretly whispered into my son's ear, I got a feeling in the pit of my stomach that I just didn't like. It even came to me twice while I was reading my book in bed last night.

So today, I gently worked my way up to asking my son what you said. He replied that you said, "you don't need to chew on that thing." Now, I'm taking it with a grain of salt, I recognize that my son is a child. But, because of his autism, he doesn't lie. My hope is that you did not intend to do him any harm. I mean, you're Santa Claus. I hope that you're intent wasn't malicious. But you provided a learning opportunity for my son so that we again talked about the fact that people need to respect his body space and they need to ask permission before they touch him and that permission needs to be given by him before he is touched. Consent. You did not obtain consent before you took my child's Bite Saber from his mouth. I'm not too happy about that, Big Guy.

I have the upmost respect for you. I get to play Santa on Christmas Eve, after all, and it is kinda exciting for me! RIGHT!? Coolest part of being an adult at Christmastime! But, because my son's developmental delays are what they are, I have found myself wondering if my husband and I will play Santa every year for the remainder of our lives on behalf of our son. Will his cognitive ability advance past the age of six?

Of course you don't know. I don't expect you to, Santa. But, I do have a request, Mr. Claus, and that is that when you are working in the community, will you please be so kind as to remember how much excitement you bring to children, regardless of their physical size or developmental age?

Because, someday, my son will be man-size, but he may only developmentally still be under the age of 10. And, if he has a Bite Saber in his mouth at that point, will you be so offended by it that you remove it again? Eventually kids with developmental delays grow to be adults with developmental delays.

Please, Dear Santa, I am asking you to be kind and spread joy, and not judge books based solely upon their covers.

Thank you for considering my request.

Respectfully yours,

Rachel Anderson

Appointments

The week of November 28 through December 4 was painfully arduous, to put it mildly. It's taken me this long just to type it all out.

Randy will officially be able to drive on December 31st, which my mother doesn't think he should do because, you know, New Year's Eve. Because it's not safe to drive ANYWHERE AT ALL on New Year's Eve, even during the daytime. Seriously? Yes, it's how she rolls. So I'm still the only driver in my house, making me responsible for getting boys to school for a 7:45 am start and a 2:00 pick up (except one day a week when they get out at 1:30). I take them to Hapkido; it provides them a constant and a security that they've known for over 5 years. I am the primary person who takes Randy to his medical appointments. And in between all of this, I've got to go to the grocery store, cook all the meals, do all the laundry (the boys have started folding and putting away; it's amazing what they'll do for a nickle or a dime. Sometimes if I'm feeling generous, or it's a bigger job, they'll get a quarter).

The last week in November was also the end of the quarter, and I gave my final exam. As my colleagues know, the last week of the quarter somehow causes some students to think miracles really do happen. This isn't 34th Street. This is reality: the work you choose to submit, or not submit, reflects your grade. It's more like Die Hard.

This isn't a plea for help. We ask for help when we need it. I'm using my blog to vent, which is what it's for. Mostly.

So, here we go. This was my week. I hope you're sitting down. My head is still spinning from trying to type it up, let alone living it. It was a week that overflowed with appointments.

Monday 11/28 7:45 am drop boys at school. Go home and get Abby to vet at 8:30 am for a blood draw to prepare for teeth cleaning on Thursday 12/1. Then at 12:45, drop Randy at the Sequim Cancer Center for a PET Scan to prepare for meeting with medical oncologist on Thursday 12/1. Thank you Zion for picking him up and bringing him home.  Pick boys up at 2:00 from school. Home, snack and a show, then into Port Angeles for Hapkido at 4:15. Home about 5:30; boys in bed about 7:30. N needs medication or his brain literally will not shut off. It's an autism thing.

Anyway....

Tuesday 11/29 7:45 am drop boys at school, go back home, and eat breakfast. Then take Randy to a 9:30 am physical therapy appointment in Port Angeles, which lasted about an hour. Home for lunch, then pick up boys at 1:30. At 3:00 and 3:30, they had dental appointments in Sequim. Then home and dinner and all that jazz.

Wednesday 11/30, final exam launches at 12:00 midnight, will be available for 72 hours (also known to some as "serious prayer time"). Take boys to school at 7:45. Randy to mental health appointment at 9:00 am in Port Angeles. Take myself to Renaissance and get some delicious food and a hot tea...and a much needed mental health break. Pick Randy up at 10 am to take him home. On Wednesdays I volunteer at the boy's school from 11:30 am till 2:00 pm. It is something I enjoy and I find refreshing; otherwise I wouldn't do it. At some point Randy for a call from the Cancer Center saying he needed to get his blood work done before his appointment tomorrow. WHAT THE FUCK?! Apparently they forgot to put in the goddamned order and so now he's got to go to the hospital lab for his labs. Fucking Christ. At least they remembered before his appointment with the oncologist tomorrow. So, after school, the boys had a snack and watched some TV at home, then we dropped Daddy at OMC, I took the boys to Hapkido, went back to the hospital about 30 minutes after I dropped him off--he was done shockingly early. Finally home, dinner, bed. Bitches. Mom's getting tired. OH! And dont' feed Abby after 10pm because she's going to have anesthesia in the morning and we don't need to deal with dog puke. 

Thursday 12/1, most important: don't let Abby have any food or water! So as the boys were getting ready for school, Isaac said he didn't feel good and then he threw up a little bit later, resulting in no school for him. I took Nathan at 7:45 and he did amazingly well on his way to school without his brother. Sometimes, you just never know which direction his autism is going to take him. Isaac threw up again while I was taking Nathan to school; fortunately he was at home with his dad, who was mentally preparing for a meeting with our medical oncologist in Sequim at 10:15. But first, I had to take Abby to the vet at 8:30 for her teeth cleaning. So I dropped Nathan at school, went home and got Abby, dropped her at Dr. Carmen's office, then home, grabbed a few gallon-size Ziploc bags, put a couple of paper towels into each bag, made sure we had plenty of towels of various sizes, loaded Isaac and Randy up for the drive to the Sequim Cancer Center, and left. When we got to the Cancer Center, Isaac put on a face mask (we prepped him and he was as ok as can be with it) and he and I sanitized our hands and went and sat on a comfy couch in the library, which was fortuitously empty. Randy met with the doc on his own, which is something I struggle with, both as a survivor and a caregiver. Because I never went to one appointment with my medical oncologist alone. Because sometimes, you need someone you trust on a gut level. But my kid needed me. So Randy went into the meeting alone. And I'm thankful that he received the awesome news that he is in remission. While we were confident going into the meeting, there's still so much fucking anxiety when you meet with an oncologist...you just never know which way shit is going to go down. We left the Cancer Center and headed home so Isaac could spend the rest of the day laying on the couch, running to the bathroom to throw up, because he'd rather puke in the toilet than in a trashcan next to the couch. Whatever. I get it. Just make sure you try your best to get there, little dude. I picked N up at 2 and took him home. Then at 4:30, he and I went to pick up Abby from the vet, where they removed four molars, two on the upper part of her jaw on each side. They showed us. It was disgusting. But, that's life. She also had an infection, so she needed antibiotics twice a day for a week, and pain meds once a day for 4-5 days, and we needed to soften her food for about a week, too. Thank you MasterCard for that one! See, Mom? I only use my credit card when I really really need to. And, Abby, Happy Birthday and Merry Christmas for the rest of your life, pup. We love you very much.

Finally Fucking Friday 12/2, Nathan makes another solo trip to school and does great. Isaac's down for the count. No fever, but still puking, which is reminiscent of the illness I had that lasted for 3 fucking weeks in November (which is the main reason I haven't blogged in a long time). So, I took him to the doctor at 10:40 am...just going into the weekend...wanted to be sure I wasn't missing something with Isaac's health...or loosing my mind...I know about Munchausen syndrome and Munchausen by proxy syndrome. Sometimes, being a Health Educator and a woman with high anxiety caused by Jewish heritage can suck and make me slip into a rapid downward spiral, resulting in extreme made up situations in my mind where I cause my own clusterfuck in my head. Remember my above comment when I said my mother said my 48-year-old, adult, capable husband shouldn't drive on  New Year's Eve, even during the day? Ok, not that she said that, exactly. But you see my point. Clusterfuck myself. And no, as a cancer survivor and a cancer caregiver, I don't automatically jump to my kid having cancer. I try not to go there. But I did convince myself that the dog had a brain tumor because when I'd pet her head before her surgery, she'd pull away. Tumor. Obviously. But, nope, it's her four cracked and infected teeth. Anyway...So at the doc's office with Sir Isaac, the new to us nurse practitioner was awesome. And pretty, and young, so Isaac instantly liked her. And he LOVED when she said, "to keep him hydrated, maybe try Popsicles" which, I forgot about because my brain is pretty full. We made a special trip to Safeway after his appointment so that he could pick out Popsicles. We stopped by the pharmacy drive-thru, but his 'script for his anti-nausea meds wasn't ready. Took him home, and I ate some lunch with Randy. Then went to pick up N and we went to Country Aire for an afternoon snack of a bowl of clam chowder for him, and a few other groceries. Then we went back to the pharmacy and got Isaac's meds. Then home, dinner, bed. Two trips into Port Angeles that day. Oh and Abby was feeling much better as evidenced by the fact that she spent quite a bit of time outside, barking at her new boyfriend who just moved in across the street. He's a big brown lab. They're totally twitterpated. Who in the goddam gets twitterpated in the fall? With snow on the ground? Whatever. But, she told him all about what horrible parents she has because she had oral surgery the day before. What an ingrate.

Saturday 12/3, this is the day after my final exam was to be completed. And all I can really say about this is, no amount of begging, pleading, whining, or crying is going to convince me that you "forgot" when the due date of the every single assignment, including exams, was given to students on the first day of class via the syllabus. And, as it turns out, it's not quite so easy to get an A in a college health class. You can email me as much as you want, but, no, late work is not accepted. My syllabus says so. And my boss supports me. So, please, feel free to contact him and plead your cases.

Sunday 12/4 and Monday 12/5, Isaac was still sick and decided to say home on Monday to rest and give himself a chance to recuperate from all the puking. Nathan made a total of 3 trips to school by himself and did great. Like most siblings, they feed off of each other and do better when they are separated in certain situations.

OK. So, anything else universe? Because I'm pretty much tapped out. Can we just be done with the shenanigans? Thank you for considering my request.

I want to sit the fuck down for more than an hour. Alone. In a quiet place. And not have to be anywhere at a particular time. Or take anyone anywhere. Or really be anything to anyone. 

But I am. And I get to. And I need to. And I'll keep going. One fucking moment at a time. 

And please don't tell me to "Just keep swimming" like you're Dory. Because stop it. Thanks, but I got it. It's not a cute thing to say to a person who is in crisis.

I'm doing the best I can do. I've been doing the best I can. Even in the many moments I've found myself curled up in a fetal position on the bathroom floor, screaming and crying hysterically because of the stress and the pressure I'm under. Because no amount of higher education can prepare a person for what my husband, my children, or I have been through. There's no textbook. There's not even a pamphlet. I mean, what the fuck do you even call something like this other than "the clusterfuck of health"? Or maybe "how to survive a dual cancer diagnosis when you're already a parent of children who behave like tornadoes"?

The best thing you can do is keep an eye on your own health. And really, if you want to do something, light a candle and send positive vibes out into the universe for all of us. Not just me and my family. All. Of. Us. 

Or meditate. Or get down on your knees before you get in bed and pray. Whatever the hell you wanna do, just be healthy. And happy. That's what I'm trying to teach my sons. 

And please be thankful that you don't have 8 medical appointments in 4 days for 3 of your family members. Because I'm thankful I made it through all of it in one piece.

Bald Woman

I know what you did.

You shaved your head. 

Because chemo causes your hair to fall out. The meds the docs are using to save your life cause fast growing cells to die quickly. Our hair grows pretty quickly, so loosing it is the result. And it sucks.

Every time you ran your hand through your hair, when you pulled your hand away, your own hair is entwined in your fingers.

And you got sad. I remember that my heart would skip a beat when I had a bunch of hair in my hand. Because the reality would set in, and my inner voice would whisper cancer.

I used to let my long hair fly out the window, on sunny spring days. I'd envision birds finding it and bringing it back to their tree to weave intricately between sticks, creating a nest. Do they weave in the Fibonacci sequence? my inner voice would ask. Always forgetting to look it up when I got home.

And sometimes I would cry when my hair would fly out the window. Sadness. Relief. Fuck you cancer. I hate you. I am not in control of my body. 

Breathe. It's only hair.

SHAVE IT! I declared.

So I did.

Well, Jackie did it, actually. Because she's a goddess in my world.

And JJ was there, too...doin' what she does. Snapping and clicking with her big girl camera. Badassery. Early in my diagnosis, Jen offered to do a photography journal. As a Health Educator, I couldn't say no!

At home. With Randy. On the eve of our 16th wedding anniversary...two days before Mother's Day.

My choice: May 8th. It was the day that worked best for all of us.
 
The sun was out. It was a beautiful, sunny, spring afternoon.

Inside.

Click. Click. Click went the camera.

Sit down, cape on...deep breath.... Scared. Nervous. 

And the buzz of the clippers.

Here we go....

 Bzzzz.....

Mohawk first! RIGHT? Because it's what you do! Have fun with this shit!

And it's gone. All of it. In a pile at my feet. Just like that. Less than 5 minutes.

 

 

Relief. Fear. Freeing. Tears. Liberating. Sadness. Reality. I am a Bald Woman. I have breast cancer.

  

Breathe. It's only hair. 

Remember to breathe, ok?

Through all of it. It's a process. All of it is a process. And it's only hair. It's gonna grow back. The important thing is that you are going through a process. You will survive this. Your hair does not define you.








Yes, Nathan shaved his head. He dug deep and let Jackie shave his head. It wasn't the first time she'd done it; but it was spontaneous for him, and people on the autism spectrum have a hard time with spontaneity.

 





Isaac chose to not shave his head. Seeing me bald wasn't something he was really prepared for. None of us were, really, but for whatever reason, Isaac was super uncomfortable with it.

I suppose when you're nearing the end of kindergarten and celebrated your sixth birthday only seven days before, your reality involves your mother having a full head of hair.

I remember he hid, and we all spent time trying to find him. Did he go out to the main road? Did he go to into the woods?

Jackie found him. She was headed towards the back part of our property, where the boys go sometimes to hike. She turned around, the sun shining on her beautiful red curls, and spotted him. Up against the house, in the back yard.

I ran. I had to instantly be a mom, and comfort my child after I just shaved my head because of FUCKING CANCER....

Thank you JJ for capturing these moments. You are an artist. I love you.


So...yeah...me being bald was kinda rough on I's at first. It surprised me: I thought Nathan would've had a harder time, because in Autism Land, we have a harder time adjusting to change. But he was much more accepting of my difference than Isaac was. And now, knowing what I have learned about my kids as they watched me go through both chemotherapy and radiation, I understand why they each chose what they did regarding their own hair that day. Your kids may not have responded the way you anticipated. Eventually, they'll learn to deal with you being a bald woman. And remember, your hair does not define you. It's only hair.
 

And you're gonna find your groove. Maybe you'll wear a wig. The American Cancer Society gives away free wigs. 

OH! And you need to contact Good Wishes! They are AWESOME!!! And they're just across the Sound! Hooray for Washington State!!! Good Wishes makes amazing headscarves for men, women, and children.

Maybe you'll wear 'do rags. My Auntie Betsy made some amazing 'do rags for my Auntie Carol when she went through breast cancer, and when I was diagnosed, Carol mailed them to me. I asked her if she wanted me to return them when I was finished using them. She immediately and selflessly said "no, pass them to the next girl."

I didn't know it would be you. I didn't know it would be so soon.

We never know.

And so, my dear friend, my advice to you, as a woman is to take this as it comes.

You are beautiful.

 

All my love always,
Rachel
XOXO

The G Tube Is Out!

So, it was inevitable.

Thank Jesus, the goddamned G Tube Randy Anderson had in his stomach came out today.

SURPRISE!!!!

Because it was leaking last week. AGAIN!

But I didn't take him to the ER this time. Because, fortuitously, he had an appointment with the Awesome PA at the Sequim Cancer Center. So, he saw her; and she had the Main Woman come in. She's our Medical Oncologist, and she's a bad ass, and she cultured the stuff that was leaking out of his stomach, and it turns out that it wasn't infected. Thank the Sweet Baby Jesus. Because you don't need to have a goddamned infection in the hole that goes directly into your fucking stomach! RIGHT!??! Oh for fuck's sake....

Anyway, so we saw the Main Lady Surgeon at OMC today. I call her that because she removed a lime-sized tumor from my right breast in March 2015. And, as far as my family goes, I'm ok with her laying hands on them and cutting them open. She's a professional and knows what she's doing. And, just for the record, NO, the Main Lady Surgeon was not the one who attempted to put Randy's chemo port in back in June. That was her colleague...he who shall not be named.

But in the exam room today, the Main Lady Surgeon, who is lovely, was like, "Hello! It's good to see you both! But not...kinda. So, let's get that tube outta your stomach, Mr. Anderson!"

And Randy Anderson was like, "Um, no way you guys."

And The Main Lady Surgeon was all, "well, the Main Woman over at the Cancer Center has been texting me and she says it need to come out. And your weight is stable and you're eating and so let's just get this done! Yes. Right now. Here. Sit down on the table and....take some deep breaths...and there you go! It's out!"

It was out.

It was really that easy.

Well, from my perspective. I wasn't the one having a tube with a balloon on the end removed from my stomach.

I honestly was expecting a pop or at least a bigger balloon on the end of the tube. It was rather anticlimactic. 

OH! But she put some kind of stuff on his skin, to help the hole heal up. Typically the hole in a person's stomach tends to start to close in a couple of hours. And the hole in the skin can also repair pretty rapidly, anywhere from a few days to a couple of weeks; everyone is different. She didn't use stitches. And I'm not a physician, and I'm not gonna pretend to be one. So, can any physicians or nurses out there please tell me what she probably put on his skin to close up the hole? (Thanks!) He said it kinda burned a bit. I told him it was acid. But he didn't think it was funny.

Also, the Main Lady Surgeon said he gets to eat lots of ice cream, so we went to Safeway and stocked up on the fancy stuff...Ben and Jerry's...and Haagen Dazs.  Because at this point in life, I'm gonna treat us to that. Especially when he's under Doctor's Orders.

RIGHT!?!?


 

Cracking

I feel like I'm cracking.

I'm tired.

Exhausted, really.

No, scratch that. I'm fucking exhausted.

I didn't sleep well last night because a dear girlfriend started chemo today.

Breast cancer.

She's 40. Has 3 young girls. Because she and her husband are just the right combo of brave and crazy.

She is younger than me when I was diagnosed at the age of 42. All the nurses and doctors said I was too young to have such an aggressive cancer. Her's was aggressive, too. And it was coming for her.

She found it because she did a breast self exam because I've been bugging everyone to do a breast self exam. Guys too. NPR did a great story about it a while ago. It's worth the read.  

Did you do yours yet? Seriously. Like right now. Stop what you're doing and do a breast self exam.

Here's an instructional video. 

No, I didn't make it. I don't have the time right now.


You're welcome.

Anyway...so she had chemo today...and another dear friend has chemo today...they were both in the Emerald City, but not together. It's not like you're gonna ask for a 2 for 1 deal on that shit! And I think a third friend, who I'm more friends with his wife because I've worked with her for 12 years at the college, her husband had chemo today...but they got good news!


And my dad had heart surgery last week. He's fine. I may or may not blog about it later. He had a valve replaced. He chose titanium, to go along with his iron will and nerves of steel. Obviously.

And Nathan had a meltdown when he got home from school today. Because he was starving. And for whatever goddamned reason he didn't eat any of the turkey sandwich I packed for him.

*Note to self; write food breaks into his IEP. Sandwich before Science!

It's the first meltdown he's had since starting back to school. I'm not complaining. Well, I am. Because that's why I blog. Right? But really, to make it 18 days into the school year before melting. Huge accomplishment.

But still....I had to make two trips all the way into town today. It's a lot. Seriously. And the Tacoma Tacoma (what we call Daddy's truck) was at the dealership because of a recall on some part that I never heard of and they said that it's not dangerous but I'm not driving Randy's truck when there's a goddamned RECALL!!! RIGHT?!?! So I took the boys to school, then came home and took a shower then zipped his truck down to the dealership to get it taken care of and got a loaner car, because they do that when you purchase your rigs from them. And then I came home and GRADED because I teach a HEALTH CLASS and I don't feel very HEALTHY! (Irony much?) And then I took Randy to his mental health appointment. And then I took him back there again, after we got all the way the fuck home because he forgot to grab his jacket when he was done with his session.

It's cool, dude. We all forget shit. But, really, get your shit together. You need to remember.

So while he was in therapy, I went to Renaissance, enjoyed the fog on the Strait, and had a strong cuppa mint tea. I also sat and completed the Adaptive Behavior Assessment System-3 for Nathan for school. Because it's part of him being back in school. For his IEP.

And, no, my husband isn't going to break the Washington State law that says he has to wait 6 months after a seizure to drive. Because, really, if he gets in an accident where God forbid someone is killed. Well...there goes every goddamned fucking bit of happiness I've been clinging to.

Not to mention the fear of loosing my home and every other vital part to surviving....

My husband is more responsible and respectful of me than that. It's only till January. And, really, I think once we get in a groove, with school being in session for all four of us and, you know, making less trips into town...it'll be a bit more manageable. That's my hope anyway.

Besides the fact that he's still got a goddamned tube in his stomach keeping him alive...with nutritional shakes. He's been feeding himself for quite some time. I'm not making anything in the Vitamix. He's afraid I'll crush up all his meds and mix them in there and kill him. Because I told him I would. Don't worry. I'm not going to. I already would've done it. And I told my therapist before she retired and I told my new therapist. And several friends. Really it's because my humor, in the throws of darkness is that.fucking.dark.

And it's important to be honest.

It's not worth the jail time.

Besides, I'd have to poison Nathan.

And I'd smother Isaac, because that chucklehead doesn't shut the goddamn up sometimes.

I have no idea where he gets it.

Randy's likely to have the g-tube for another 6 weeks or so....I'm hoping by Thanksgiving...but it may be Christmastime...it's all dependent on how he does eating orally...which is still limited. And so he's seeing a mental health therapist.

Because CANCER. 

I didn't sleep last night.

Because my friends had chemo today. 

*Note to self: on the chemo eve of family members and/or close friends, go to bed within an hour of putting boys to bed.

And my husband is still suffering.

But I have a great new bed (don't worry, that blog on how that came together is coming).

And I get to be alone.

Try not to worry, Pat, I'm taking time to breathe. Thank you for the reminder, friend.

Because I don't want to feel like I'm cracking.

I am working on taking care of me. 

The first little bit of school

So far, the first little bit of school is going better than I expected.

Better than I anticipated.

Better than I hoped.

Better than I dared to ever dream.

Seriously, you guys.

Because Sept 1 was the first day of school, and in Autism Land, that's a really big deal. To start something as profound as returning to school, on the first day of the month. Really. And it was risky because it was a Thursday, but it's not as bad as starting a week on a Tuesday, which was the next week, and that had the potential to be a clusterfuck, especially had it been a full moon, but, fortuitously, it wasn't. The full moon is today Sept 16 (they got an app for that!).

I originally requested that Nathan return to school part time, 3 days a week, from 7:45 until about noon. He and I had discussed it numerous times and this is what he and I agreed to, so when I met with the principal, this is what I negotiated on his behalf, and it felt right. It's important to test the waters and not feel unnecessary pressure to jump right back in. And, as he and I discussed, I was going to be in the classroom with him until he and I agreed that he could manage on his own. Baby steps. If he felt he could handle more days and time at school, everyone was going to support that decision; but the decision was to be Nathan's.

So, on the first day, which everyone starts on the first day of school, even if you're a part-timer, and even if you're special needs...when I asked him around noon how he was doing, he said good. And then I asked him if he wanted to stay or to go, and he said stay. And so we stayed. For the whole day. Until 2 pm. Six hours and 15 minutes, of partying. Right? And seeing friends and strangers and so many different faces and lots of stimulation and thank the Sweet Baby Jesus for the Bite Saber that I found on line and ordered which happens to be IN HIS FAVORITE COLOR because, clearly, divine intervention made the owners of ARK Therapeutic  decide that forest green be "Xtra Xtra Tough, recommended for more avid chewing.  These are the most firm and provide the most resistance to the jaw.  No chew tool is indestructible, but these are very tough."  For the kid who chews holes in his shirts, you get the XXT I'm not gonna let you down AFA* Chew Stick. And I got one that looks like a Lego (but they call it a Brick Stick) because seriously, I don't know if he wants a smooth surface or a bumpy surface. And he said he liked both when we looked at them together; done. And on the first day of school, he chewed the fuck out of that Bite Saber. Best money spent. After school, I did see a few more seizures than I would've liked too...but not nearly as many as I saw after we went to the movies and saw Star Wars: The Force Awakens in the theater.

On the second day of school, Friday, he was chewing and chewing and chewing on his Bite Saber and walking down the hall, and one of Isaac's classmates came out of the classroom, and started walking with us in the hall. I introduced them and the kid said "what's that in your mouth?" And Nathan said, "A Bite Saber" without taking it out of his mouth, and the kid understood what Nathan said, because then the boy said "what's it for?" and Nathan goes "chewing" and the kid said, "but why do you have it?" and Nathan said "because it helps me feel better."

And that was it. The kid didn't bat an eye. Like totally normal interaction, not a big deal, it's cool that you're chewing in it.

I was pretty impressed with what I had witnessed.

Why?

Because my son had a verbal exchange with a kid he had never seen before. And they went back and forth several times in the conversation. It's like THREE sentences for my kid. Which, before we had several major life experiences in the last 18 months, my kid would have looked at me to answer the kid. Would have looked at me to say whatever variation of "it's ok to talk to him" not because he's scared...but because he lacked the confidence. And seeing a child's confidence build...amazing.

And the other piece that was awesome was that the kid was cool about dealing with something different. And this gives me hope.

On both days, Nathan and I went out to recess at the same time as Isaac's class. It was one of the things I discussed with both of the boys; and it's important to me as a parent that my kids are together, and have access to each other during the day. I've made special requests on behalf of my ADA kid, and they are being met. On Friday, Nathan chose to stay until 2 pm also, which was really exciting, and really exhausting, too. Because I'm in a heightened state of awareness while I'm with him; I can only imagine the amount of cortisol running around in our brains...I try to not perserverate on it.

Labor Day weekend was ok...we mostly laid low and tried to just be together. We tried to help Daddy feel better...and give him as much space as he needs...as he recovers from his own Cancer Adventure.

On Monday evening, I was starting to prepare the boys...Isaac would be going to school the next day, and the plan was that Nathan was going to stay home and go to Hapkido. The plan changed very quickly when Nathan said, "Mom I want to go to school tomorrow." And, I'm not gonna say no! RIGHT?!?! So, I emailed his teacher and the principal letting them know the change of plans, and they were completely supportive. So, he went all four days the second week; and he stayed from the beginning of the day to the end of the day. He ate lunch; he played on the big playground for morning recess and for recess after lunch, he plays on the special needs playground, and I'm fine with it because Nathan will have a foot in the neurotypical world, and a foot in the disabled world. Inclusion is a HUGE issue in the disabled world; and of course I want my kid to be included...but I don't want it to come at a cost that is exhausting for him, or me or the other members of my family. We've been through enough.

Nathan's doing great. Seriously better than I ever expected him to. He's enjoying himself. He's happy. He's learning. He's making his own decisions. He's tired. He hasn't really melted down. I have. A lot. But Sweet Jesus, I'm a hot fucking mess on a good day...but I'm also doing the best I can. Isaac has rolled right back into the routine. I am thankful that he loves everything about school: learning, being with friends, recess, math, library time, math, music, math, math, and more math. And, it helps that his teacher, Mrs. N, has Legos in the classroom and that they get to create written stories using the Legos.

The only thing left to do is prep for my own class; school starts for me on Monday. I'll be teaching my basic Health class online. Yes, Randy will be teaching two online math courses. He needs to keep his head in the game.

This weekend, we'll go to the annual picnic that PDMA has. And after that, we are planning on laying low. The first rains are coming...and we'll likely bake some chocolate chip cookies with pecans and watch movies.



*AFA: Ain't fucking around

Your 10th Birthday Eve

Dear Nathan,

Happy Birthday Eve, my first born child!!! You will be 10--TEN--tomorrow! You're going into double digits! The only other time you'll add another digit is if you make it to 100. Not a level...well...kinda I guess.....

You. I am so proud of you. You said you wanted to go to school, and you are. Your first six days of 4th grade have been pretty smooth...and full of emotion and amazement and anxiety and stress and transition...which is hard for you...and for all of us in this autism family. And let's face it, skipping a Monday is difficult on the neurotypical world too.

But you're about to be 10!!! A decade. Daddy said that the reason 10 is big is because we count in base 10. Yes, there are three bases in baseball. But I'm not talking about baseball. I'm talking about mathematics. Don't be too autistic and ADHD right now. Pay attention. We count in base 10, as opposed to base 8, or base 7. So, we count 10, 20, 30...not 8, 16, 24...and not 7, 14, 21.... Got it? Base 10. I suppose home plate is a base. But I don't really know because I'm not a baseball fan.

Thank you for contributing to the conversation, child. This is kinda new for you...especially with other people...like the folks you didn't know on the first day of school. But you're working with them...and they're working with you...and it's been good. It's been better than good. It's been pretty fucking amazing, kiddo. I'm really proud of you for taking one day at a time.

Yeah...Mommy probably shouldn't say fuck so much. I'm trying my best to not. Yes, just like you are trying your best to not step on my foot or hit your brother or laugh hysterically. I'm sorry I get so mad at you when you laugh hysterically. I know it's your reaction to distress. I try my best to walk away from you when you do it. But sometimes I'm just done for the day, before I even get out of bed. I'm under a lot of pressure, child. "Oppressive" doesn't begin to describe it.

And I'm sorry. I'm sorry that you and your brother were almost parentless. Orphans. And, yes, Dean and Reid would be fantastic brothers to you and Isaac. But, that means you'd have no parents. That Daddy and I would be dead (God forbid). And that's just not something anyone deserves. So, let's think positive and continue moving forward. Because that's the best we can do. And, we certainly didn't intend to each get our own cancer. It's just the cards we were dealt. Yup. It's kinda like Go Fish. I love you and the connections that are happening in your brain.

Let's love each other. And ourselves. Let's be kind. And honest. And listen to our bodies when we're hungry or tired or cranky. Yup. Hungry, tired, and cranky are three strikes. And then you're out and in meltdown mode. And that sucks. So, let's prevent the meltdown. Eat strong foods, get plenty of rest, and try your best.

Instead of saying sorry after you hit Isaac or you use mean words, you need to follow the Cougar Code. Yup. The one at school. Do you remember what the Cougar Code is? Be respectful; be responsible; be a learner; and be safe. RIGHT! You got it! So, be respectful, keep your hands and feet to yourself. Be responsible, give yourself your medications when you're supposed to. Yes, I'll mix everything up for you. But YOU need to eat that ice cream mixed with medicine. I know it sucks. I know it's not fair. I know the ethosuxamide tastes awful. I am sorry we cannot mix it in the ice cream. Well, because it's more like cough syrup. You just gotta drink it down. Yes, you can have a Starburst afterwards. But if you choose to not take your meds, what will happen? Yes. You'll seize. And your brain will hurt. We don't want that. What do you want? Ye!. I think you will be great at pushing carts for folks at Costco. Maybe, if you don't seize, you can learn to drive a forklift! Wouldn't that be fun?! Moving pallets! Yes! You would be great at that! You'd get to help so many people! So, take your meds! The taste is temporary. It's a small problem. Yes, epilepsy and cancer are huge problems! You are becoming quite a learner! Yes, just like the Cougar Code says! Exactly, Nathan! You're getting it! And how can you be safe? Yes, taking your meds...not fighting with Isaac, especially when Mommy's driving! What else? How else can you be safe? Going outside when the fire alarm sounds is a great way to stay safe. I know it was scary and it hurt your ears. And I'm sure that all the kids at school were nervous and scared during the fire drill yesterday, too. But it's over, right? And now you know what to do just in case there's a fire. Right?

So, tomorrow...the day you were born...it's supposed to be sunny and beautiful and warm. Every year on your birthday, it's never rained. It's always been a beautiful day. So, let's have a beautiful year. Be brave! Have fun! Show your courage! And remember it's ok to cry. It's ok to give hugs and get hugs and kisses from me and Daddy. And Isaac if he says ok. I know you think it's fun to squeeze him, but you don't need to make him scream...it's not cool. But what is cool is seeing you grow and change...especially the maturity you've had since February 2015, when we pulled you to homeschool you and then I found the lump in my breast. You amaze me.

But, really, your birthday is about me. Because I'm the one that amazes myself. I gave birth to you 10 years ago. I listened to my body and pushed you out and my entire body tingled like nothing I'd ever experienced. It was amazing. It was a Sunday; and Daddy put the Cowboys game on. And, no, we don't watch football anymore...because it's just not what our family does...yup...we got a lot of life happening. Baseball? You want to play again next summer with Special Olympics? You bet. And soccer? Sure!

I love you Nathan Zachary. My hope for you this next year is that you have fewer seizures, that you learn and grow and thrive in ways that I cannot even begin to imagine.

All my love always,
Mommy
XOXO

PS...don't forget that I'm a badass.

The last three days of summer 2016

The last three days of summer were pretty crazy-making for me, since I'm trying to run the Anderson Family Circus. Being the Ring Leader of a saucy almost second grader, a special needs almost 10 year old who's been homeschooled for the last year and a half (hyphens deleted intentionally, obvs), and taking care of my husband, who's a stage four tonsil cancer patient is a huge responsibility. Especially for a woman in a male-dominated field, which is what my home life is like. I'm the only female human in my home and the past week was pretty full of emotion. No, I'm not premenstrual; I don't get my period anymore, it was a chemo perk.

On Monday (Aug 29) I, the Ring Leader, took the monkeys boys to school for a visit to Nathan's Sped (Special Education) classroom.  But we call it the Resource Room, because times change and things are labeled differently now than they were when I was in grade school, and also, the staff who work in a Resource Room have got to be resourceful. Duh. And they gotta be clever and quick and think on their feet faster than Lightning McQueen. And a Resource Room teacher may only have 12 kids in that Resource Room, but trust me when I tell you it feels like a lot, and I mean a whole fucking lot more kids. It's like having 36 neurotypical kids. Seriously.

During our visit with the teacher, Nathan did really well during the 90-ish minutes he, Isaac and I were at school. And it was late in the afternoon. Like, we got to school at FOUR. And for us, doing something late in the day is a big deal, because it can interfere with our bedtime routine, which is sacred in an autism home...for the brief bits of sanity I have remaining. Nathan was both excited and nervous, which are all normal emotions for kids--and adults--at the start of the school year. But, he also had some confidence in that Isaac and I were with him.

Tuesday (Aug 30) I took the boys to Hapkido, and they had a lot of fun! We are all thankful Mrs. V supported the boys being together in the homeschool class this summer, which enabled me to cut down on the number of trips into town, which ultimately decreased my stress and the amount of pressure I have upon me.

Wednesday, (Aug 31) the day before school started was interesting in that Randy came out from the bedroom and said "I'm telling Dr. Chryiath I'm done with chemo." And I was like, "um, ok...." because, really, this wasn't at all on my radar, and not what I expected my husband to say first thing in the morning, especially since I was prepping for my day, which involved taking the boys to school for a visit; and it's an open house...so all 500 kids will be there, with their parents. My stress level was already pretty elevated. And I needed to prep food and clothes and boys: I was moving in a completely different direction than him. So, I was not prepared for what he said.

But here's the deal, Randy made an important decision, that kept him awake much of the previous night, which is known as Chemo Eve (and is NOTHING like Christmas Eve, or even Birthday Eve. No. Very different, indeed!), and he didn't take this decision lightly. He was going to the Cancer Center Wednesday morning knowing that he was having a doctor's appointment, but that he wasn't going to have chemo that day because when they drew blood for labs on Monday, it turns out his platelets were low. Platelets are in your blood and are responsible for clotting, and if the platelet count is too low, they can't administer your chemo because bad stuff will happen.

The thing is, is that for my husband's tonsil cancer, the primary treatment was radiation. And the chemo, which was supposed to be three doses, 21 days apart, was given as a booster for the radiation. And he completed the radiation treatment on August 26th. His chemo was not considered a systemic treatment; it was considered a targeted treatment, because they were going for the throat (if you will).

So, he asked our medical oncologist, and she agreed. Mathematically, he ended up doing about 75% of the recommended dose, but the caveat is that, again, his chemo was a booster for the radiation; they worked together to kill the cancer cells. And so with the doc's blessing, as of last week, he's done with chemo.

But he's not completely done (seriously, this is our life). He still has to go in for fluids three times a week because the type of chemo that they gave him was very dehydrating, so they hydrate him. No, it's not that simple for him to increase his fluid intake; he isn't consuming anything but a few sips of water in a 24-hour period; all foods and fluids and most medications are being put in the G-tube. So, when he gets fluids, he goes to the Cancer Center (or the hospital) and they hook the PICC Line in his arm up to the IV machine, and he gets a liter of saline infused into his body, and it takes about three motherfucking hours. They have to hook him up, start the drip, and then unhook him. And then, because he's got a ton of fluids in him, he's up peeing for about 15 hours afterwards.

But he may be done with getting fluids on Friday, 9/9, which is Nathan's Birthday Eve (no pressure, dude, for reals). The discussion today (Sept 7) with the Physician's Assistant (who is lovely) was that he would see how he's feeling and if he feels like he needs more fluids next week, then he'll get to the Cancer Center for more fluids, but if not, then he he won't.
 

But the thing is, is that HE made the decision about stopping! And I am really really proud of him for that!!!!

HE felt strong enough and courageous enough and empowered enough to say to a medical oncologist, "I'm done. I am scheduled to have two more chemo treatments, but it's not going to affect the outcome because I am done with radiation and why am I prolonging just feeling like shit?"



Culturally, we perceive physicians to be omnipotent deities. We think they know best. And, yes, a doctor definitely knows a LOT about the body and if they're a specialist, like a medical oncologist, they are oftentimes presented in film or books as these highly emotionally distant people, who are probably on the higher functioning end of the autism spectrum. But, I can tell you that when you get a good doc, which my family is both fortunate and thankful to have...the good doctors...they listen to their patients, they recognize that they themselves are human, they are willing to think outside the box, and they are likely to check on you when you are in the hospital for an unexpected overnight visit, they are compassionate...and they truly care about their patients as people who have lives....these are the doctors that I want to work with on staying healthy and keeping my family healthy.

And, let's face it, from the beginning, one of the things I was trying to teach Randy Anderson was that he needs to listen to his body and advocate for his own health. For nearly twenty years, I've been teaching students to do this for themselves...and I think some of them get it. I'm thankful that Randy was able to effectively communicate what his needs were to his physician, and that she listened and agreed with him.

The final thing that was also huge about Wednesday last week, the last day of summer vacation, was that I spent a good part of that cold, wet, grey day prepping the boys for Thursday, which was the first day of school. I pepped a lot of food, so I could make the first two days of school easier on me, since I was not simply dropping them off. I was planning on being at school, primarily supporting Nathan as he transitions to the classroom, since I was anticipating a rough start. I also had them pick out their clothes, made lunches, and pack backpacks. You know, all stuff "normal"families get to do the day before school.

Wednesday I also took the monkeys boys to school for a visit...the one that was the open house...and there were a LOT of kids there. But we Andersons did really well. And we were excited to get back in the classrooms. And we each got an ice cream cone on the way out (thank you PTO!).

So, the last three days of summer 2016 were pretty big for the Anderson Family Circus. And we never have to live those three days again. It is behind us; we are moving forward.

In other news

In other news, Nathan has decided he wants to go back to school.

And I totally support his decision.

We've talked about it on and off over the past year and a half (let go of the missing hyphens, grammar nazis; you know who you are).

This summer, he spent quite a lot of time with two women I trust implicitly: Momma Christine and Momma Bonnie. And they told me that Nathan said that he's going to school in September. Furthermore, he even said which school he's going to, which is the same school he's attended in the past and where Isaac currently goes.

So, I'm cool with this. He'll be 10 on September 10th. And his seizures are under some pretty serious control. He's in a very different place than he was a year and a half ago (now I'm just omitting them to piss you grammar nazis off. Is it working?). 

He started a new pharmaceutical medication in April, after I returned from my trip with Stacie to Tucson. And I give this pharmaceutical medication credit for decreasing the seizures so significantly that he was able to play soccer this past spring. (yes I culturally reference myself; it's my blog and I can do what I want.)

Yes, this is his SEVENTH motherfucking pharmaceutical that we've tried to control his seizures. It's what happens when you're diagnosed with Lennox-FUCKING-Gastaut Syndrome, or LGS. There's not really a FUCKING in the name. It's just how I say it. And this syndrome was discovered by two neurologists:


Lennox-Gastaut Syndrome was first defined by Dr. Henri Gastaut in France in 1966 as a very severe form of childhood epilepsy, with certain common features. Dr. William G. Lennox in Boston described features of the EEG in this condition. 


So, you gotta say Gas-TOE for Gastaut, because he's a French dude. Ok? Lennox-Gas-TOE. Not Gas-taught. Gas-TOE. And, this is the incredibly rare form of epilepsy that my son has. Of course. Because we Andersons don't do shit half-assed. Oh no. Only FULL-ASSED from the Andersons. (hyphens for the grammar nazis! you're welcome!)

Annnnywaaaayyyy...last week I met with the principal, who is fully supportive of Nathan attending 3 days a week, in the mornings, until about noon-ish. My plan is to roll both boys in at the start of the morning, because it'll be easier on ME to get them both up and moving and out the door at the same time.

And he'll be on the big playground. Because he has friends that he's known his entire life that are on that playground and that are going to want to play with him and who are going to look out for him and who are going to help him.

And he'll be in the lunch room. And he'll have the same special ed teacher, but we don't know who his gen ed teacher will be, but that's ok. We'll figure it out. He will have input.

But this is really exciting for us as a family. Nathan's taking initiative in his own life, and for any kid, it's huge. But for a kid with special needs, it's even bigger.

Cry For You

I recently had the opportunity to practice yoga in the barn at a local lavender farm in Sequim.

But this isn't just any lavender farm. It's B&B Lavender Farm, and is owned by some very dear friends of ours, Zion and Kristy Hilliker (and her parents, Bruce and Bonnie--it's a family effort!).

And the yoga studio I recently started practicing at, Poser Yoga, does these pop up yoga classes every so often in different locations in the community. And while I'm currently unable to get to classes on a regular basis, and I've got a pretty strong yoga practice at home, I couldn't pass up the opportunity to practice with my friend Kristy in her barn. RIGHT? And, even though they have about 20 bazillion bunches of lavender hanging in the barn, the scent of lavender wasn't nearly as strong as I anticipated it would be. It was really hardly noticeable. Seriously. I'm not a huge fan of lavender, but I am a huge fan of supporting my friends and doing yoga with them.

The class was fantastic; there were about 10 people who attended, and no, I didn't know anyone except for Kristy and the teacher, Jenny (who is the owner of Poser Yoga). And it helped bring awareness to what I can add to my own practice to strengthen it; basic poses that have fallen off my radar, like Warrior II and Triangle. Who forgets the Warrior and Triangle series? This girl. Because CANCER makes you forget basic things, including your own name. Anyway, it was a pleasure to practice with a supportive group of strangers. It was humbling and beautiful; challenging and stress relieving.

After the class was over, Zion, who is Master Gardner (basically, this means the dude is a badass and knows more about lavender than I ever thought possible [and I mean that as a compliment]) gave me a tour of the barn where he uses lavender to create everything from lip balm to essential oil to soap to all purpose cleaner to sell in the gift shop. I also got to visit with Kristy, and inevitably we talked about my family's situation (not bad, it's just that it's gonna come up, right? It'd be like if you had a chance to talk to Paul McCartney, you'd talk to him about the Beatles, right? You wouldn't just be like "Yeah, your work with Wings was cool" and you certainly wouldn't say something like "I really liked it when you did 'Say, Say, Say' with Michael Jackson," and leave it at that. Right?! You're gonna ask him about Revolver or Sgt. Peppers. Seriously.)

Annnnnnyway....

Like many people have said to me, Kristy said something like "I don't know what to say. I'm sorry I can't find the right words. I read your blog, and Randy's blog...and I wish I knew what to say that would be helpful."

And, as usual, I said something like, "I don't expect you to know what to say. I am in an incredibly difficult and scary position.... Nobody knows what to say. And nobody wants to be in my position."

But then she said something nobody has ever said to me before, and it impacted me on a very deep level. She said: "when I read your blog, I cry for you. I just cry because I can feel what you're feeling when I read what you write."

And I'm thankful she cries for me. Because I also discovered that day that I don't cry for myself. Or for my situation, or my husband, or my special needs son, or my neurotypical son, and what he deals with in dealing with his family's ailments. 

So I've started crying. 

A lot. 

Because why? 

Why me? 

Why my family? 

Why my husband? 

Why my children? 

Why? 

It's not because "god" pointed a finger and said, "Let's give her breast cancer and him tonsil cancer and him a constellation of brain disorders." 

It's not because I curse a lot. Or not enough, in some instances. 

It's not because I'm being challenged by "god" to be stronger, or more diligent, or more or less of WHATEVER. 

It's not to make me stronger. 

It's not because I pissed someone off in a previous life. Or because I was "a difficult child."

It just is. 

But, GODDAMNIT I am sick and tired of dealing with these major health crises in my family. 

I'm not a crier. My therapist, Jan, who just retired after me seeing her pretty much weekly for 3-1/2 years, can attest that I'm not a crier. I cried on her less than a dozen times. I started seeing her just after Nathan was diagnosed with autism, when he was 6; he'll be 10 on September 10th. And she's been with me through autism, my breast cancer, the death of my father-in-law while I was going through cancer treatment, my husband's cancer, my mother's undiagnosed dementia, and the incredibly rare skin disorder my mother-in-law has. Normally, a therapist will have a person come to them for support with ONE of these issues; but, unlucky me, I get them all at the same time. The experience, insight and support Jan provided me throughout these health issues was a tremendous help.

At one point, she said, "maybe you're like Nelson Mandela, who was forced to embrace his situation and his life's work became that of a great leader and a great man. Maybe you're life's work is to embrace this shitty situation that you're in and you're becoming a great leader, especially in the field of Health. I mean, look at what you went to school to do. Look at what you chose to major in. Look at how you're educating people. Look at the fact that you're a college professor, teaching about Health issues. This is your life's work, Rachel."

And so I find myself working to embrace my situation. To accept it. And with that, it's ok to cry for myself. It's ok to feel sorry for myself, for my family, and to wallow in it for a little bit. To feel weak, as alien as that feeling is for me.

But, it's also important to get up and do Warrior and Triangle. To build strength. To feel strong. 

And, it's ok to cry while I'm doing Warrior II. Because sometimes in life, we find ourselves in a dichotomous situation, and it's important to find a balance. 

So, thank you Kristy, for being honest and telling me that you cry for me, because I am learning to cry for myself.

Seven Hours

Today, while Randy Anderson and I were at the cancer center for seven, yes I said SEVEN, hours...

And who gets cancer treatment for seven motherfuckin hours? Jesus it's been a long motherfuckin day! 

I don't know how some dear friends of mine, who are also on a cancer adventure drive to Seattle, which is like 2-1/2 hours plus a ferry ride...I mean they go over the night before, but still. Because his treatment was like NINE motherfuckin hours!!! And then those crazy sonsabitches drive HOME after that! That, THAT, is some super motherfuckin powers right there! (Don't correct my grammar, bitches!) 

Anywho...

So today, the pharmacist who's mixin up the chemo is a former student of Randy's. Thank you, Jake, for paying close attention in math. Seriously. You're saving lives. 

Oh and thanks Randy Anderson for being a kick ass math teacher. That's paying it forward, yo. 

So while we were at the cancer center for seven motherfuckin hours, the boys were with their first ever kid sitter, Trey, who is now 20 and home on summer break from college. And Trey took the boys to Salt Creek, which, everybody knows is THE place into be when you're a kid because there are tide pools, and old WWII bunkers, and a park and its beautiful!!! Even on a grey day, like it was today. 

And I did not worry about them. 

So thanks, Trey, for showing my kids the best day ever. I'm so thankful for you. 

And thanks Jackie, you're an awesome mom. I love you. 

Excruciating

Being here is excruciating.

We're at the Sequim Cancer Center.

Again.

Every week day, Randy has radiation treatment to his throat. The inside of his mouth is sunburned, making it impossible for him to eat orally. As part of his radiation, he has a bite guard, and he's struggling to get it in his mouth. This morning's treatment took a little longer than usual. I don't know why: he didn't say; I didn't ask. He's had a rough morning.

The G Tube is in, but he's still nauseated and woke up the past two mornings vomiting. I think it's because he's not putting enough "food" in his tube. Really, we need to stop calling it "food." It's a shake. Not like a $5 milkshake, but a high-calorie, nutrient-dense shake. So more like a $10 milkshake. And corn syrup is the first ingredient after water. No, it's not Boost or Ensure; it's Fibersource HN brought to you by the good folks at Nestle' Health Science, which is the same company that makes Boost. So, remind me again why this $10 milkshake is better than me taking the food he normally eats and just throwing it in the Vitamix with a lot of water (or milk or chicken broth or bone broth) and putting it into his tube?

Two cases of these Fibersource HN shakes arrived via FedEx on Saturday. One of the home health nurses came by on Sunday, because, according to our insurance, who is covering the cost of the "food" at 100%, Randy needs to be supervised the first time he is "fed the food." In other words, we gotta jump through a hoop. Fine. It's not like I haven't accessed the tube; it's not like he's not "feeding" himself. I told him last week that I need him to feed himself, because, really, if the boys are left unsupervised for the hour it was taking Randy to pour what I was making into the tube, the house would fucking burn down. I left them alone for five minutes yesterday while they were eating, and somehow, the counter next to the sink, as well as most of the kitchen floor, and several large areas around the kitchen table were covered in water. COVERED. They even managed, somehow, to get food in the Lazy Susan cabinet. What the fuck? No rest for the weary.

The home visiting nurses have told him that it should take him about 10 minutes, and certainly no more than 20 minutes, to "feed himself" or, "pour your shake into your tube" as we are starting to say. "Feed himself" implies the man is going to eat by picking food up with his hands or a utensil and putting food in his mouth. My autism dictates that we call a spade a spade. So, the dude is pouring a shake in his tube. Be honest about it. It's not a "feeding" it's a "pouring." And we're moving on!

So, anyway, we're here. At the Cancer Center. He's getting fluids, and he's asleep. He needs to, I am sure of it. And I get it. Going through cancer is excruciating.

His schedule looks a little like this:

Monday 7:30 am radiation, 8:00 am fluids; typically done about 10:30, home by 11.

Tuesday 7:30 am radiation, 8:00 am radiation oncologist, 8:30 the nurses change the bandage on his PICC line and draw blood to send to the lab for prep for chemo tomorrow; typically done about 9, home by 9:30.

Wednesday 7:30 am radiation, 8:00 am medical oncologist, 8:30 am fluids and chemo; last week we rolled out of here about 1:30; home by 2 pm.

Thursday 7:30 am radiation, and that's it! Out by 8:00 am!

Friday 7:30 am radiation, 8:00 am fluids; typically done about 10:30 and home by 11.

The schedule is incredibly intense. They say it's one of the most intense forms of cancer treatment going. Of course it is. 

Last week went pretty well, considering he had chemo on Wednesday, then he took a shower on Thursday, mostly by himself. It wasn't what I'd call "fun naked time" by any stretch of the means. The man has a one tube coming out of his body and another one coming out of his left arm. He's lost so much weight that he looks a little like a white Ethiopian child from the 80's. Live Aid anyone?

The problem, from my perspective, is that he's already got food issues (the man has an aversion to fruits and veggies; he tells me he can taste the chlorophyll in plants). So, when you take a person with limited food choices, and then whittle it down even further because he's going through cancer, and everything, according to him, tastes like shit...then he's not going to be able to eat orally. The G Tube helps, but he's got to put shakes in it every 2-1/2 to 3 hours. Three hours is pushing it. If he gets too empty, then the nausea starts again. And the dry heaves. And this morning he threw up because he was so nauseated.

And I get it. Because it's not like I haven't been there.

But the bottom line is, he's got to take control of this and stop letting it control him. He is the patient...

So.......

You've got to pour a shake in that fucking tube every two and a half hours. Set a timer, motherfucker, because I have to deal with boys, and I can't be keeping an eye on your shit. I got a whole bunch of other shit to deal with, including my own shit. So get your shit together. You have the ability. You have the drive, the inner motivation, to get through this. I know you do! I cannot do it for you. I can support you in many of the things you're going through, but I've been there and done that. You need to figure out...you need to force yourself...to get out of bed, to get up and be proactive as a patient, to participate in your food! Aren't we trying to teach that to Nathan? Jesus, we gotta spoonfeed him sometimes, and that motherfucker is 10! You've got to pour shakes in your tube, to take your meds, to set your timers as reminders for each of those things. Food is medicine, be it consumed orally or via the tube. And you need to do what you can to empower yourself to get through this.

I love you with all my heart. But GODDAMNIT, you need to get your ass in gear and start participating in your treatment. Stay ahead of the hunger and the pain and the anxiety. You did a really good job last week with it, especially the first few days after chemo, and I'm really proud of you for that!

The nurses and the doctors have told you, I've told you, your entire job is to live through this. It's not teaching. It's not worrying about your students. It's getting out of bed every hour. It's pouring a shake in your tube so you can sustain. It's TEMPORARY. And you need to use every fucking tool in your toolbox to get through each day. And if you're stoned all day long, who gives a shit? It's not like you're allowed to even drive anywhere! I'm carting your ass all over the Peninsula! And on Thursday, I'm taking the boys to the lake because the three of us need to get out there!

Bitches!

Get to it!

All my love always,
Rachel

You know I'd give you everything I've got
For a little peace of mind
I'm so tired, I'm feeling so upset
Although I'm so tired I'll have another cigarette

Lennon/McCartney

Simple Pleasures

Today's simple pleasures include having breakfast in bed with my love...

I also took a long hot shower, scrubbed my entire body with exfoliating gloves, because, you know, intense self care is imperative and it makes me fantasize about scrubbing cancer away. I also shaved my legs, and used all the hot water. Because I'm an adult and I can. 

I changed my toe nail polish from "ice queen blue" to "Wonder Woman Yellow." Not that they're really called that. I made those up because I'm clever, and use polish to reflect my moods. Wonder Woman Yellow is appropriate because tomorrow starts an intense week for my family. Randy starts back to chemo on Wednesday. And I'm going with him. Because he needs me to be there. Duh. Like this is a question. Right? 

Anyway, the other simple pleasures of the day include:  

Ensuring everyone who needs medication got their medications. 

Everyone ate as healthy as possible, let it be liquids or solids. 

I changed the sheets on our bed and washed our quilts and put them back on the bed. Randy was able to help supervise, which was huge! 

Randy actually had the strength to get out of bed and watch some tv, both with and without the boys. More than one episode of "The Twilight Zone" tends to make them scatter. 

I had the opportunity to feed Randy several times throughout the day and while the mechanical aspects are smoothing out, the emotional intensity is not much different than making love: It's very intimate, with a mixture of both pleasure and sadness. 

We spent a good chunk of the day propped up in bed, coloring. It helps pass the time as the thickish smoothies use gravity to drain the syringe into the tube and into his stomach. We have learned that if the smoothies are too thin, it goes in too fast and his stomach gets upset. 

We are slowly picking ourselves up and we are moving forward. Who knew we'd be so thankful for such simple pleasures: showers, television, food. But also, I am thankful that my body works the way I need it to. I am thankful I am able to throw some nutrient dense foods into the vitamix and whip up several meals for Randy in one session. I'm thankful I'll be at the appointment with the nutritionist on Tuesday at the cancer center, with my husband, so I can learn more about his specific needs and how to help him better. I am thankful for friends who help us. 

I am choosing to end my evening by relieving stress and anxiety: smoking an Indica, practicing yoga, and going to sleep. 

Namaste' dudes.