Anxiety

My family has anxiety.

Major anxiety.

All the time.

Every fucking day.

It is a constant and relentless bitch on our backs.

Generally speaking the normal anxiety level in our home is like a 7 (out of 10). We have significant stress from the myriad health issues we deal with. As part of his autism, Nathan doesn't transition well, and even with enough notice that we're about to make a transition (like, "this is the last TV show, then we're going to take an outside break") there's potential for him to have a meltdown. Gotta make sure the kid has zero strikes--so his tummy's gotta be full, and his brain's gotta be working properly for him to transition. Isaac, tell him it's the last show, and it's the last show; not too much push back. No potential for a meltdown. But with Nathan, there's always potential for meltdown. Always.

Like any family, there are certain times our anxiety increases. Generally speaking, our high anxiety times, like most families, are breakfast, lunch and dinner, wake up and bed times, and getting to and from school during the school year. And every single one of those involves transition. And, you read the previous paragraph, right? Nathan doesn't transition well. Potential for meltdown. Seriously.

But, unlike other families, my family has so many medical appointments, that we have anxiety about them, even if they are not for another couple of weeks. For example, in the immediate days after Randy's first chemo on 7/13, we started asking questions: will his reaction be as bad? Will he be worse? Better? Since he's on 1/3 of the dose they originally gave him, will he be on his ass 1/3 of the time (so only 3 days instead of 9) or will he feel 1/3 as bad as he did? Or, maybe, because they reduced the dose, but will ultimately increase the frequency of doses as well as having a new anti-nausea medication schedule, he won't have any nausea at all and he'll feel totally fine. I'm trying to be optimistic, here, people!

Randy starts back to chemotherapy on Wednesday, August 3. And while I know, and we know, that that's still a week away, and that we need to deal with just being in the moment, my reality is there are details to work out and plans to be made. 

He cannot drive, he will need me to take him to chemo, which is fine and I can totally do it. I need to be with him; he needs me to be with him during the infusion. I never took one of my 12 infusions alone. Not one. I am thankful that I have people who love me and who went with me and kept me company. It's not that it's gross; it's just that it's a lot to deal with and can be overwhelming. Randy came with me to my first chemo infusion, because I was scared outta my gourd and needed my partner in crime to be by my side. But for the remaining 11 infusions, I had Florence or Caitlin or Jen with me; sometimes I'd have two of my friends, because they are that supportive and I am that loved. And I am that thankful. My friends at my chemo appointments was what kept me going; talking, laughing, coloring, drinking smoothies and coffee, eating snacks. And lots of chocolate. Really, we just hung out, and I was medicated with marijuana and getting my toxic medicine in order to beat the breast cancer that tried to kill me. It was all good and I got through it. And Randy was with the boys. And I felt at peace about it because they were with their other parent.

But, when Randy goes back to chemo on Wednesday 8/13, we need to have child care. Someone who can be present with my children while their father receives a toxic medicine to cure his cancer. From 6:45 am until we get home...around noon...maybe...we're trying to find out how long the infusion will take. We don't know yet, but will know soon. I hope. Like later today. Randy's at the cancer center right now, getting his fluids. He's alone. I participated in the meeting with the medical oncologist via FaceTime. And I am thankful for our friend who could take him to the cancer center, and bring him home. My anxiety is through the roof. Because my husband is alone. But it's just fluids, it's not chemo. It's just fluids...it's just fluids...it's just fluids.....

And he's going to need fluids probably on Monday and Friday. So each of those days, he'll likely be alone at the cancer center. It's too soon to know for sure; and it's ultimately his decision. He may want to be alone while he gets fluids so that he can get a nap or write or color or whatever.

But, from day one of Randy's Cancer Adventure, I've been saying that this is his health and his experience and his cancer is different than mine and that he's a different person and things will proceed differently than they proceeded with mine.

And so far I've been right. I'm totally brilliant, you guys. 

And then there's the entire food thing.

Jesus the food issues in my home.

But that's a blog for another time.

And then there's the number of different medications we're on.

Which is also a blog post for another time.

Because Randy Anderson just texted me and is on his way home.

More Questions

"Dad, is this cancer thing gonna take up our whole summer?"

"Yes, son. I'm sorry."

"Mom, why does Daddy have cancer, too?"

"Because Daddy has a virus that made his cells reproduce really rapidly."

"And they had a party? Like your cells did, right?"

"Kinda, yeah. But it was a party for bad cells. They were the cells who got sent to the principal's office a lot."

"What's a virus?"

"A virus is a life form that is really really tiny, but causes people to be sick."

"Can we see it?"

"With a microscope. We can also look at pictures on the web."

"Mom, was your cancer caused by a virus?"

"It was not. We don't know exactly why my cancer happened. But we know that it's not in our DNA, which is a good thing."

"I hate cancer, Mom. It caused Pop-pop to die. And it made you really sick. And now it's going after Daddy."

"Yeah, but Daddy's gonna be a survivor, too. What can we do to help Daddy feel better?"

"I'll draw a comic book about Daddy Hapkidoing the cancer cell!"

"That's a great idea! I'm looking forward to seeing what you create!"

"But Daddy doesn't know Hapkido!"

"That's ok. You guys can help teach him Hapkido. Daddy's strong. He's going to be ok. He just needs a lot of help."

"More help than you did?"

"Yes. But also different help. I was able to drive myself to chemo and radiation. But I still needed help from our friends to care for you guys, and to help make meals, and to break up the day for Daddy when I was so sick from chemo. Being the only person responsible for making sure everything in the house gets done is tough stuff." 

"Is Daddy gonna be able to drive again?"

"Yes. But not for about 6 months."

"When will it be 6 months?"

"Well...let's count."

"July...August...September...October...November...December...January. Mom. That's a long ways away."

"It'll be after the first of the year, as long as Daddy doesn't have any more seizures."

 "I sure hope Daddy doesn't have any more seizures."

"Me, too, dude." 

"I hope this is the last summer we have to deal with cancer, Mom."

"I hope so, too, kiddo."

"Can animals get cancer?"

"Yes."

"I sure hope Abby doesn't get cancer. Especially next summer."

"I hope she doesn't either." 

"Mom...does Daddy have to go to the cancer center tomorrow?"

"No. It's Saturday. Daddy doesn't have treatment on Saturday."

"Or Sunday?"

"Not on Sunday either."

"That'll be a stay home day, right Mom? So Daddy can rest...?"

"Yes. Sunday will likely be a stay home day."

"But he'll go on Monday?"

"Yes."

"Who's gonna stay with us?"

"Well, I hope that I can stay with you and that Uncley Michael can take Daddy. I'll know more on Sunday afternoon. As soon as I know, I'll let you guys know. Ok?"

"Ok. Mom, does Daddy go to the cancer center again on Tuesday? And Wednesday? And Thursday and Friday?"

"Yes. Each day next week."
 
"Mom, does he have to go each week? For the rest of the summer?"

"Yes, dude, he does. I'm sorry. Daddy has to go to the cancer center everyday of the week, except Saturday and Sunday, for the rest of the summer."

"Mom. I feel badly for Daddy that he has to do that."

"Me, too, buddy. That's why it's especially important that we are respectful and considerate to each other. We need to help each other. And right now, Daddy needs a lot of help and patience."
 

"Mom, I love you."

"I love you, guys, too. I'm sorry we're going through this again. Your Dad and I wanted better for you. We didn't plan this. I know it's hard and that you're dealing with a lot of different emotions. I am glad we're able to talk about the challenges and hard times we're having. Thank you both for talking with me. I'm really proud of both of you and I love you."

"Past the moon, Mom?"

"Totally."

Three Days

The last three days have been a roller coaster, to say the least.

Sometimes, I feel like my life is a poorly written comic book. Because really, what else can I do besides laugh? 

Friday I took Randy to the Sequim Cancer Center for his third dose of radiation on his neck. And he was feeling the side effects from the chemo they dosed him with on Wednesday. He's pretty much been down for the count for the entire weekend. And it sucks.

But I get it. I may not be the most sympathetic person in the world, but I get it. I'm not a cold, calculating bitch, I mean, I really struggled with math. Right? But I was just in his position, which, you'd think, make me more sympathetic...but part of it is, it's his experience. I can't do it for him, and he doesn't expect me to.

And it's not that I don't feel his pain, because I do. It's just that I'm a tough act to follow. Right?

But the chemo nurses. Those broads don't fool around. They gave him a big dose of Tough Love on Friday. This, of course, was after they saw him on Thursday because he was so queasy. No vomiting. Just queasy. And, really, nobody likes nausea. I'll take diarrhea any day. Right?

On Thursday they loaded him up with sailene and anti-nausea meds in his PICC Line. And they rocked it on Thursday, and he slept most of the day, which I totally understand because chemo makes you have NO FUCKING ENERGY!!!!

It's hard to even roll your ass outta bed to go pee, let alone be transported to Sequim. That requires walking more. And, of course, driving down the highway at 65 mph because you gotta get there fast, like Wonder Woman flying her invisible jet, past the State Patrol office...I have plenty of time to meditate on what I'd say, just in case I get pulled over. Which, hopefully I will not.

Anyway, so Randy's been parked in bed all freaking weekend and I gotta get these trolls out an moving. And I have no plan.

But I had a great save. 

So on Friday, we get home from the Cancer Center and he gets in bed and Florence hung out for a bit. Nathan schooled her in Monopoly. Isaac worked on a puzzle...and read a book.... Then I got the boys outta the house and we went to town and ran errands, including getting the truck washed, vacuuming it out (work, trolls, work!) two trips to the pharmacy (again!) and out to Ediz Hook. It was a beautiful summer day.

Apparently I did such a stellar job wearing out my kids, that Nathan was fried and fell asleep before brushing teeth and reading.              

Crashed out on the glider and ottoman

For a second I thought Isaac was gonna smash Nathan

So I let Isaac mess with his brother. Why not? Live a little! Enjoy life! Laugh! Put books in his shorts? Sure! Go for it, kid! He's crashed OUT, yo! Yes! Let's take a picture! Great idea, Isaac!

But then that sweet, sleeping face got to me. And I had Isaac stop....













Today I took swimming. Isaac's been asking to go for a while. So I told them that I was scared to go because the last time we were there, they acted like jackasses. Which, really, we were all having fun and then I gave them a 10 minute and then a 5 minute warning, and then Nathan lost it and had a category 12 meltdown. So it's been a while since we've been. Oh, and there's the whole fucking both parents having cancer thing. That kinda put a major halt on swimming. And any chance of a "normal" childhood...but, really, in an autism house, normal is a setting on the dryer.

Before swimming.

But we rocked it at the pool. I told them that if there was any shenanigans or jackassery that we'd be leaving immediately. And they kept their cool.

They have the basics, so we started in the shallowest end, then went into the diving bay. I told them that if they wanted to jump off the diving board, they had to swim to me, and I was out about 4 feet past the length of the diving board, then they had to swim to the wall. And they had to do this twice before going off.

They did it. I totally owned them.

And then Isaac asked if he could jump off the diving board. And I told him to ask the guard, so he did and she said yes. And they were like the energizer bunnies, with like 5-6 other boys about their ages. And I was the only mom going off the diving board. And I was diving. And it felt so SO good to fly again, even briefly, to be in the air and then knife the water and touch the bottom and then go back up, watching the air bubbles move up with me. And to come up for air....

And we stopped at the Post Office for Randy's new Limbo arm cover for him to take a shower (please Jesus take a shower!). I had no idea they even made such things. Hopefully it works. Because I know taking a shower will help him feel better. He just needs to be able to stand up for more than five minutes. He's thrown up a little bit. He doesn't have a fever. He's drinking water. No, I do not think he needs to go to the ER. I know the number for 9-1-1. And if I felt it was an emergency, I'd call. But it's not...he'll be ok...he's just gotta go through hell.

And then, tonight, a dear friend, who has significant experience with sudden, and incredibly traumatic, major life events, stopped by. She gave me crabs. Heh. And halibut. And smoked salmon. It's all frozen. And I could totally be a selfish bitch and be the only one who will eat most of it. But I won't...because it'll keep for when Randy's feeling better, too. Thank you, dear friend. I love you and you give good hugs. 


Finally, tonight, Abby was Miss Excited and gets me to go outside after I got the boys in bed, and shows me how proud she is of herself for rearranging the drainage tube and trying to trap the squirrel. Thank you, Abby, for reminding me to not take life too seriously, and for asking if anyone has an idea of what to do with this.

Besides laugh.

At my life, which is a roller coaster in a poorly-written comic book.

"Mom there's a squirrel!"

Raised By Wolves

Had you been listening...

Isaac: "Mom, can we listen to U2?"

Me: "Absolutely. Which album?"

Isaac: "Um..."

Me: "The one we've been listening to? It's called Songs of Innocence."

Isaac: "Right. Can I pick the song?"

Me: "Totally. Which one?"

I: "Raised By Wolves."

Me: "You got it."

And silently I say: Sometimes I think you are. And sometimes I am afraid you will be.

And I cue it up, trying to suppress my fear and anxiety for their sake, if only for a few minutes, as we connect in music.

And we move forward in our day. 

Thankful that the sun is out.

Thankful that we are having a stay home day.

Thankful we're together as a family.

Thankful Daddy's feeling better with lots of help.

From all of us.

Thank you.

Of course

Of course.

Of course he had an immediate and strong reaction to the chemo he has had in his system for less than 24 hours.

Of course. 

Of fucking course. 

Thank you Florence for showing up at 6:50 am, prepared to drive Randy to Sequim, and instead staying with N&I for 2 hours so that I could I could take him. 

Thank you Nathan and Isaac for rolling with the unexpected level 10 stress this morning and staying with Auntie Florence, playing Monopoly and doing a large floor puzzle. I love you both.

Thank you Lynn the Rock Star nurse for being there and getting him back to the infusion area.

Thank you Marcia one of my favorite chemo nurses for getting our medical oncologist, getting fluids started, getting anti-nausea meds in him and for supporting me in leaving.

The PTSD I'm experiencing is real. My anxiety really started yesterday, right after they brought Randy back from radiation, and just before they hooked him up to the machine for his first chemo infusion. In his PICC line.


This morning I was out of bed at 6, and Randy was barely able to move, feeling incredibly nauseous. But he rallied and ate a few bites of pancakes and then the boys got up and Florence showed up and we left. He barely made it through is second radiation treatment and we got him in a wheelchair and Lynn the Rock Star Nurse took his vitals and got us over to the infusion side of the building. Dr. C the Cancer Doc was right there, in charge of our emergency. She did assessed him and put in her orders for fluids and meds.

I left my husband at the Sequim Cancer Center, at 8:30 am, went home and got lots of hugs from Florence and my kids. Then I took the boys to Hapkido, ran to the pharmacy to see if his new 'script was ready, then to the Post Office--thank you everyone for sending everything--and then to Olympic Bagel Company for something quick, nutritious, and delicious to eat.

Thank you Mrs. Ventura for honoring my request and handing my children back to me on a silver platter. I anticipate having to use an entire roll of paper towels to mop them up later. Especially after they turn into puddles after they get showers this afternoon. I appreciate you working their brains and their bodies and for wearing them out.

Picked up the boys at 11 and headed back to Sequim to pick up Randy. Florence offered, and while I appreciated the offer, getting Daddy was something the boys and I needed to do. Team Anderson.

He's been home and sleeping for much of the day. The boys and I are tired, but we're moving forward.


Come on, bedtime...just a handful of hours away.

Oh, and fuck you cancer.

You can't take away my well-deserved hot shower, my yoga practice, and an early bedtime.

Even if it means the best I can manage for dinner is giving the boys Tillamook cheddar cheese, sea salt potato chips and lots of summer fruits. There are worse things to eat.

Especially on a Big Cancer Day. 

What We Need

Many people have generously asked us what we need to get through this summer and Randy's Cancer Adventure. And we absolutely appreciate the offers to help. One of the things I really did learn last summer is that it's ok to ask for help...it's ok to accept help...and that it is important to be open to receiving the help that we ask for.

Last summer I was largely out of commission when it came to cooking and cleaning, and many members of our community helped by preparing and delivering meals to us. Momma Teresa was--and is--the Ultimate Cleaner and for her help I am eternally grateful! And while we were very specific in our needs as a family, and we absolutely appreciated the help and the food and the generosity, the simple fact is that we are a family with special needs, we thrive on routine, and having food delivered did create some stress. Tastes, textures, and smells, all wreak havoc on autistic people, and so to decrease our family stress this summer, what is most helpful for us is gift cards to the following places (please and thank you):

Costco

Safeway

Amazon 

Sunny Farms (for you out of towners, this is a local grocery store)

Drake's U-Bake Pizza & Subs (so we can grab sandwiches on our way to the lake or a pizza on the way home from the lake--or both!)

Tendy's Garden Chinese

Gastro Pub

Strait Slice Pizza

West Side Pizza

Applebee's (because I can get the boys out of the house, we can go to a park and play, and then go have lunch)

IHOP (Both Applebee's and IHOP are in Sequim, which is where the Cancer Center is, too.)

Please feel free to mail anything to:

Anderson Family
PO Box 97
Port Angeles, WA 98362


Please do NOT mail things to our physical address because we have had mail stolen out of our box. It's part of living in the country--our home is about 1/3 of a mile to the mailbox, which is on the main road, so having a PO Box is the easiest and safest thing for us! The Post Office in Port Angeles also accepts packages addressed to our PO Box; they notify us about any packages that come.

We absolutely appreciate the support of our community during this incredibly difficult time. It's not that we don't want to see folks...we simply need understanding from our friends that our schedule is pretty tight because Randy has radiation every day. Receiving mail will be the easiest thing for us...and it's exciting...we need to look at little things for excitement.

I'm not intending to sound rude...however, we just need fewer things to do...to coordinate...to have to worry about...and while last summer, people stopping by with meals really did help all of us because it meant someone was coming by to say hi and bring us food...and especially helpful for Randy because he was the primary care giver for me as well as the boys (and seeing another grown-up during that time was very helpful for him!). But this summer, because I'm able to cook a couple of days a week, and the boys are ok eating leftovers, we need as few disruptions to our routine as possible, and gift cards are really the best thing for us as a family. We very much appreciate our family, friends, and community members respecting us and meeting us where we are.

We have help with hauling our trash and recycle to the dump (Thank you Orion!).

We have help with yard work (Thank you Danny!).

We do not anticipate any more trips to Seattle until a few weeks after Randy is done with all of his chemo and radiation treatments...so we're looking at mid-September for that.

The only other major thing we will need help with is getting Randy to and from the Sequim Cancer Center for his radiation treatments, which are each weekday. He needs to arrive no later than 7:25 am, and it's about a 20 minute drive from our home to the Cancer Center. You'll need to arrive at our home no later than 7:00 am, please and thank you!

We've have several people who are willing to help with this. If you are interested in helping, please email me directly at andersonrachel9@gmail.com and I will add you to the list. We are asking that one person commit to one day each week. So, for example, one person is dedicated to taking him and bringing him home each Monday, another person on Tuesday, and so on. That way, we know who is responsible for whichever day. So, if you could also let me know what day of the week you prefer (or if you have no preference, tell me that, too!) that would be helpful.

Starting July 27, there will be two days each week that Randy will be receiving an infusion of fluids, meaning that he'll have to sit for a couple of hours hooked up to a bag of saline. His medical oncologist ordered this because the type of chemotherapy Randy is receiving, as well as the radiation, both cause serious dehydration and can really do a number on a person's kidneys.

If you are the person responsible for transporting him on either Wednesdays or Fridays, you can drop him at the Cancer Center and then the boys and I can pick him up when he's done, since he'll be there until about 11. We certainly don't expect you guys to wait for him for 2-1/2 hours!

Ok...so that's what we need for now: gift cards to the above mentioned businesses and transporting the man to save his life. No pressure. And thanks in advance for the help and meeting us where we are.

Sending faith, hope, peace, and love to each of you.

Love from Team Anderson
Rachel, Randy, Nathan, Isaac, and Abby
xoxoxo

Three Days, Four Appointments

We had three days in the city. Just Randy and me. We'd never done anything like this before. Not even before kids. Because we had Schindler. And he was the Dog Child. And we were focused on our careers. And we were the employees who never really took breaks. But we're changing.

So,  yeah. First timers in Seattle for what we define as "an extended period."

Thank you Christine and Jeff for watching N&I. You guys are rock stars.

Thank you Jeff (not the same one, but both awesome dudes) for carting us around the city and taking us to medical appointments. This is the same Jeff that helped on the day of Randy's surgery.  Send our regards to your lady....

Late Tuesday night on the boat; the beauty of the skyline across the water.

Up early Wednesday  morning for two appointments: The Man ENT and the Speech Therapist who sounds like a smoker but isn't--I asked. Obviously. But very diplomatically. I have some class, you guys. She had cancer of the larynx when she was 3. You heard me. Three years old. Pediatric Cancer survivor. Bad assery, right there, you guys. Bad. Assery. And so began her transformation into a Speech Therapist.

The Good News: Randy's cleared for cancer treatment. Radiation to start Wednesday. He went on Tuesday (thank you Zion for taking him; our regards to your lady....) to the Sequim Cancer Center and got his immobilization device. In his mouth. And they screw the immobilization device to the table he's laying on. I asked him if they bought out The Gimp for him. But they didn't.


Anywho...the Speech Therapist gave him some swallowing exercises. Seriously. This is a thing. I had no idea. My friends the SLPs, of course, are aware. But they don't teach us Health Educators everything. There's a lot of learning on the job and in life, yo. 

So we finished up and ate lunch at this little hole in the wall called Piroshki on Madison. Freaking fantastic! Very simple place, full of delicious goodness and salmon and cream cheese and bread. Seriously. Needed a salad, but they're a bakery. Salad prevents cancer. Just trying to do my part.

So...we connected with Jeff and then we went to Half Priced Books. Because that's what we do, even on a "vacation," which is combined with four medical appointments. Seriously. We go to book stores. We're book store whores. In a good way. And we totally scored on a ton of books. And we bought some books as souvenirs for the boys. Because that's how we roll.

And on one corner, in order, the shops included a tattoo shop, a marijuana shop, and a comic shop. Just for the record, I purchased nothing in those stores. I just liked that the culture is changing where these three stores are available, let alone next to each other.

Then we went to some Italian place with a hot waitress over in Ballard. Freaking delicious. The food. I have no idea how the waitress was. Heh. See what I did there?

On Thursday, we slept late, like you do when you have no children to be responsible for, and then dragged our arses outta bed and went to the EMP Museum. And this place was so amazing. Their mission statement:

EMP is a leading-edge nonprofit
museum, dedicated to the ideas
and risk-taking that fuel
contemporary popular culture

Seriously. So, of course we're going in. We saw the Star Trek, Sci-fi, and Nirvana exhibits. The horror exhibit wasn't for me, so I wasn't there very long. I'm not really down with scary shit. Makes me get the heebee-geebees. But, that's what happens when you grow up believing the boogie man is going to jump out at you from a bush and take you away.

On Friday morning, we headed to Swedish at Cherry Hill and Randy had an EEG, but he didn't take any selfies, which is pretty selfish, really. And then later in the afternoon we saw the Epileptologist and got the results of the EEG. Basically, Randy has seizure disorder and can't drive for 6 months (which is the law in Washington State) and has to take an anti-seizure medication twice a day for the rest of his life.

At some point, we don't know when, Randy had a stroke. I learned that we can have strokes at any time and they can be so small that we don't know it is happening. The Epileptologist also said that there are very small spots on his brain, and the way the spots look mean that something happened with his heart. In 2004, Randy was hospitalized for 17 days for staph endocarditis, and during that time he had several MRI's and they also showed these spots on his brain. The hypothesis is that these spots are scars, basically, which are probably petechiae. And there's one lesion in his brain, which is somehow related to the stroke. The next step with this is that Randy will be seen by a stroke specialist over in Seattle. But, first, he's gotta get through cancer treatment.

We had a very long drive home after the meeting with the Epileptologist. Christine brought the boys to us that evening. I picked Abby up on Saturday morning from where we board her. It was good for all 5 of us to be home and together after what felt like being gone for a very long time.