What We Know

What we know is that there is still cancer in my husband's throat. The Man ENT did the best he could, but the margins weren't clean.

There were 24 lymph nodes that were pulled, and 2 of them had cancer; 1 of them was leaking cancer--so the cancer was spreading.

Stage 4 tonsillar cancer. (Or "tonsil cancer" for us non medical folks). 

Fucking Christ. (RIGHT?!?!)

Anyway, so what we know is that Randy needs to have 33 hits of radiation and 3 doses of chemo. Radiation will last roughly 6 weeks, and they'll do the chemo doses at the beginning, in the middle, and at the end of the radiation treatment.

Comparatively, not competitively, I had 21 hits of radiation and 12 doses of chemotherapy. (It's cancer, not a competition, this, this is what I say to my children).  

We met with both the radiation oncologist and the medical oncologist this week and that's what they told us. Both docs are in Sequim; his radiation oncologist is new to the Peninsula (but we liked him) and we get to work with Lynn the Rock Star Radiation Nurse. And his medical oncologist is the same amazing lady doc that I had during my chemo treatments last summer. Her last name begins with a C, but I can't bring myself to call her Dr. C because she's a cancer doctor and that just feels a little icky.

I don't know when exactly he'll start any of his treatments. What we know is that he needs to have the following appointments (not in any particular order) before radiation can start: 

Dental appointment--our dentist needs to examine Randy's mouth and then send a report to the radiation oncologist. Because Randy's tumor was, basically, his tonsil, and the tonsil is inside the mouth, it's standard of care to get clearance from a dentist before starting radiation treatments since they'll be shooting his mouth with radiation. If a person needs dental work prior to starting radiation...then they'll deal with it. Hopefully he'll be in the clear.

Nutritionist--Randy is already limited in terms of the food he is able to consume. Partly because of his autism (I'm not kidding--he says he can taste the chlorophyll in plants and I kinda believe him). Partly because he's still healing inside of his mouth and he really shouldn't be eating, you know, anything hard...so no chips, no tacos (and those are food groups in our house!)...but you get the idea. And, he's lost about 15-18 lbs since his surgery, and the docs have all said he'll loose more weight as swallowing becomes more and more difficult. So, meeting with a nutritionist will provide him the opportunity to know what types of food he'll have the ability to eat that are nutrient dense. Basically, he'll need lots of protein, but he needs alternatives besides those $5 milkshakes I'm whipping up.

General surgeon--Randy has to have a chemo port inserted under his skin so that he can take his chemo. I have a chemo port. It sucks. I'm working on a blog about it, so be patient, please. But basically, it's this piece of plastic that sits under my skin and the nurses tap it and administer chemotherapy this way--because if you inject chemotherapy into a vein on your arm, that shit'll kill you. Well, not really. But it'll jack up your veins pretty good. So, he needs a port.

With all of the members of the health care team, we've discussed having a feeding tube inserted into Randy's stomach so that he gets as many calories as he can during his radiation and chemo. However, according to the research--and this is based upon what the doctors are telling us; not what we've researched on our own, because let's face it, we trust our docs to inform us and we're both freaking exhausted and aren't doing our own research...we learned a long time ago (specifically 5+ years ago when Nathan was diagnosed with epilepsy) that we are one click away from going to ScareTheHellOuttaYou.com and ever since then, we deal with the problems as they come and we do our own research when we feel we need to. Anyway, so the current thinking is that if patients can push through the pain they will have when swallowing, they will be more successful in the long run. It's a use it or loose it type of thing. So, at this point, he's not getting a feeding tube. If, however, he needs one I'll just put whatever the rest of us are eating into the Vitamix and he'll consume the calories...nasty...but reality for the folks who have to deal with that in their lives; don't judge.

Surgery for the chemo port--this'll happen once he has a consultation with the surgeon. Yes, the surgery will happen in Port Angeles. No, I don't know when it'll be.

The Man ENT and the Speech Therapist--we will make another trip to Seattle so that the Man ENT can say "yes, you look great and are healing up nicely...you're cleared to start treatment" and during that trip, we'll also meet with the Speech Therapist so that she can give Randy some swallowing exercises. No, I don't know what the exercises involve. Yes, I've made inappropriate sexual comments. I'm the wife. I'm allowed.

Radiation simulation--the radiation oncologist and the radiation techs will take time to get Randy positioned on the table, make a bite guard for him, and other immobilization devices that they'll use as they shoot his throat with radiation to kill the cancer. They do this because they want to make sure they are zapping the cancer and killing every last cell. When a person receives radiation treatment, they need to be in the same position every single time. And you gotta lay still for like 15 - 30 minutes while you're on the table. So, they have to use these immobilization devices, because, let's face it, it's like everyone who goes into radiation treatment practices yoga or is a nude model. But they gotta make sure you're not gonna move and they gotta position and reposition the machine...so you're laying there for what feels like a fuckin' eternity. But it's only like 15 - 30 minutes. Not that the treatment takes 15 - 30 minutes; the treatment only takes 1 - 2 minutes. What takes time is getting on the table in exactly the right position; the techs getting the machine in just the right position (thank you computer software) lining up your tattoos on the laser beams, and making any last minute adjustments to make sure you're in exactly, EXACTLY, the right position. Every. Single. Time. And they'll do this 33 times.

Randy is 4 weeks post-op. Generally, they give a person 6-ish weeks to heal from surgery before they start any form of treatment. No, he won't have to wait another 6 weeks after the chemo port is placed before they start tapping the chemo port before accessing it for chemo drugs. While I don't know exactly when all of this will go down, I know it'll happen within the next 2-3 weeks. I anticipate that he'll start radiation and have his first dose of chemo shortly after the Fourth of July.

And all this shit has to happen like, next week. And the week after.

And then he'll start treatment.

For Stage 4 tonsillar cancer.

Because, we, clearly...apparently....just have major health...shit...go down in our family.

Of which I'm tired.

But I keep going.

And going....

And we keep moving forward.

Because it's what we do.

And it's what we know. 

And, yes, we'll get outside...

and enjoy the lake...and each other...and our friends who are our family...

and continue to live our lives...and make happy memories...

during this unimaginably difficult time in life.

Fuck you, cancer.

It's what I know. 

Eyeglasses Holder

I recently purchased an eyeglasses holder. 

Like I'm 70 goddeamned years old or something.

Not at all like the hot model in the link above. She looks like she's 22, right?

Yeah.

No, so I'm only wearing it around the house because when I'm home, I'm doing a lot of transitional work. I look down (don't need my glasses) to cut bell peppers; I look up to make sure whatever wrestling maneuver the trolls are doing is within the range of normal. Having to take my glasses off and put them on is happening much more than it used to.

I'm aging.

Gracefully.

As gracefully as I can. 

No, I'm not going to rush out and get bifocals. When I had my eyes examined in December 2015, when I was done with all my chemo and radiation, which you shouldn't get your eyes examined when you're going through chemo because that shit fucks with your vision, so they recommend you don't get your eyes examined or get new glasses until you're done with all of your cancer treatment. Seriously, the shit I learned is amazing. Anyway, when I had my eyes examined at the end of last year, my eye doc said, basically, "your vision hasn't changed all that much, which given what you've been through, it really pretty surprising. Don't buy new glasses because you don't want to waste your money; you'll need to see me in a year and you'll likely need bifocals then. It happens to everyone around the age of 43."

Super. So, bifocals are in the queue, but I'm just hanging for now. I've known it's coming. But I'm waiting. I'm ok. I'll know when I need to see him. I have a few other things on my plate right now....and if I felt I needed to get my eyes checked, I'd go in.

I've not yet worn my new eyeglasses holder out in public.

I don't want to embarrass myself, or my children, by having someone call me their grandmother. Which, it's happened. But that's what happens when you have children later in life. And you live in rural America, people tend to procreate at younger ages. It's not offended me. But it has surprised me.

But ever since I purchased my glasses holder I've noticed other ladies wearing them. Now, mind you, they're all significantly older than me. But I'm seeing them. For example, last week, I noticed this, like, septuagenarian who was wearing some eyeglasses holder BLING! 

I mean, her beads were WOW! They were kinda like this.... 

I'm not saying I want those. I mean, they're 33 bucks! Right?!?!

And I had no idea that eyeglasses beads were a thing! They are a freaking fashion accessory for the fashionable senior citizen! And they can be so expensive!

Seriously! NO IDEA!!!!

So, now, I'm looking at old ladies, and I'm like, "I'm gonna be like her. She's hot." Because some old ladies are hot, with their hair, and their clothes, and their glasses bling.

It's all about setting your intention.

And about being healthy.

Why Daddy?

Why Daddy? Why did the boys tell me to kiss their feet on the way home from school?

I don't know, honey. But I'll talk to their parents and it will stop.

Why Daddy? Why did we have to put him to sleep? Will he wake up?

Because he's an old dog, honey. He's had a really good life. He's probably in heaven chasing tennis balls and playing in the water and lounging in the sun.

Why Daddy? Why did my best friend from last year punch holes in my school picture and stick it in my locker?

You don't know it was her, honey. But do you want to be friends with someone who does that? That's not a good friend. That's a good enemy. Please stay away from her. She's not very kind. 

Why Daddy? Why didn't the truck stop?

I don't know, honey. He must not have seen you. He must not have been paying attention. 

Why Daddy? Why did he break my heart?

It's what happens in life, honey. But your heart will mend. Be patient and give yourself time to grieve. Eventually, you'll meet someone else and the two of you will share a life together.

Why Daddy? Why did I have the child with all the special needs?

I don't know, honey. But he needs you to take care of him. It's going to be a long haul. Take it one day at a time.

Why Daddy? Why did I get breast cancer at the age of 42? I'm too young to have such a horrible disease. 

I don't know, honey. But you got through it and you're a stronger woman because of it.

Why Daddy? Why did he have to get cancer too?

I don't know, honey. I'm sorry. I wish I could fix it.

But Daddy, he may not be able to swallow anymore after his radiation treatments. I'm scared for him.

I know, honey. I am too.

I wish you lived closer. Daddy. I really need a hug from you.

I know, honey. Me, too. 

Today

Today is the first anniversary of the death of my father-in-law.

Today is also the day we found out that my husband's tonsil cancer is considered Stage 4.

OH! Lemme get the good news of the day outta the way--the Beautiful Physician's Assistant (and she is quite beautiful--and she's fuggin smart--bonus!) at the Man ENT's office who gave us this devastatingly shocking news did take out all 17 of the surgical staples today. And lemme just say I'm thankful those goddamned things are gone. No more Frankendaddy. The boys feel much better about it.

So, the four of us made an early trip for a post-op appointment in Seattle. Thank you iPad for helping us through that. And Jack-in-the-Box for nuggets and fries and shakes (not for me; I ate fruit and nuts, drank my water).

Stage fucking FOUR.

The boss level.

The pathology report puts it at Stage Four. Actually, that's Stage IV, according to the American Cancer Society. Goddamned Roman Numerals that nobody can read.  There is no Stage Five or V (again, Roman Numerals--so glad that shit's done!)

The Man ENT took a total of 24 lymph nodes from Randy's neck, and of those 2 tested positive for cancer, and one of them was leaking cancer. Leaking. Cancer.

What. The. Fuck.

Like a balloon that's leaking air....

There's still cancer in his neck, because, as good as the Man ENT is, and god knows he did his best, there's only so much he can do...and he got the best margins as he could. But he couldn't get it all out.

Perhaps that's why he was a bit jittery after surgery.

I picked up on something...but wasn't sure what it was...thought it was a bit normal, you know, since the man had just recently had his gloved hands in my husband's neck.

But he knew. He even said something like "got as much as I could"..."margins were as clean as could be..."

He did his best. The science he has studied for years and his skills enabled the Man ENT to do his best to help my husband.

So, Randy will be starting radiation soon...probably in July. We meet with the new Radiation Oncologist at the Sequim Cancer Center next week. My Radiation Oncologist is no longer there, which is unfortunate. BUT, Lynn the Rock Star Nurse is there, and so I sent her a direct message in Twitter when Randy was first diagnosed, and really, we're going to meet with Lynn and break the new doc in.

According to the Beautiful Physician's Assistant, typically radiation is every week day (Mon - Fri) for 6 to 7 weeks. Right. So, mathing that, that's 30 - 35 doses of radiation.

To his neck.

His fucking neck.

Thyroid gland?

Swallowing?

Tasting food?

Jaw?

Teeth?

Feeding tube?

WAIT! WHAT!??!

Stop. Stop the fucking ride. I wanna get off. Gimme your hat so I can throw up in it.

I can't.

I can't rally the troops.

I'm exhausted.

I'm scared.

I'm more scared for him than I was for me.

Mine was just a Stage Two (or "II" as the Romans say) tumor. No lymph nodes involved. But mine was a Triple Negative, which means there were no hormones attached to the tumor, so they had to give me the biggest doses of the most effective forms of both chemo and radiation.

He gets more radiation and less chemo. The Beautiful Physician's Assistant said that they typically do chemo in conjunction with radiation, two treatments, maybe three, during the 6-7 weeks he'll be receiving radiation.

I've seen those people at the Cancer Center. The ones who wheel their IV (and I mean "intravenous," not "four") pump on a pole from the infusion area over to the radiation area. And my heart bleeds for them. Every time. Because that takes a lot of energy to do that. It takes an indomitable will to take a chemo infusion and take a does of radiation at the same fucking time!!!!

Randy Anderson has an indomitable will.

I have faith in him.

And I hope that we, that he, will survive.

I'll do my best to be at peace during this stage.

I love you, dude.

November 19, 2015

Wow. Thursday was amazing.

I am so thankful. And so fortunate. 

I am very loved. 

By a LOT of people! I mean--WOW! I am truly overwhelmed.

It was the type of day that will stand out for a long time. Like your wedding day. Or the days your children were born.

Unless you have like 15 kids, then you'd probably mix that shit up, right?

My day started at 5:05 am, when I heard and felt Randy get out of bed to go help Nathan. Fortunately Nathan got back to sleep, but was borderline-meltdown because his stomach was empty like a Sarlacc Pit when he got outta bed about 7, insistent that his brother play a round of Candy Land. Seriously, the kid could've eaten Boba Fett and still needed more food.

Isaac's got a lot going on, getting ready to leave the house by 7:25. But he stopped and played Candy Land, because that's the type of brother he is. And so did Randy, because that's the type of dad he is. There was just enough time before they left for school and work. Abby played too. But it's hard for her because she doesn't have opposable thumbs. Isaac won. No meltdown occurred. Gratitude. 

Nathan and I played Connect 4. Fine motor skills. Planning. Strategy. He's working on these pieces. Monopoly Jr. was next. Counting the number of correct spaces. Counting money. Adding. Subtracting. Basic reading. He's getting it. But lots of colors on both games can cause stress for him. We had a strong snack before leaving the house. Always have a strong snack before you go workout with Mrs. Ventura. Always.

We walked into the dojo for Hapkido, and when I opened the door, Meghan, Vanessa, and Emily greeted me with gusto! YES! Thank you ladies! As I was helping Nathan into his dobok, I breathed with you--and needed it. Gratitude.

I got to spend about 40 minutes talking to my Mom-in-law, Uncle Jerry & Granny. On the actual phone. Because, really, the only time I use the talkie part on my phone is for medical appointments. Right? It was fantastic to talk with them. I drove out to Ediz Hook and watched the waves roll in on the north side of the spit. It was grey in Port Angeles, and the sun was shining on Victoria, BC and it was beautiful. I stayed in my truck, where it was warm, just talking with them. Sometimes, you just gotta hear your Momma's voice, you know...?

I picked N up from Hapkido, where he lead the class in stretches for the first time! So proud of him! Thank you Mrs. V for the picture! This is what autism can look like. This helps me feel like we're all doing something right for Nathan; creating a supportive community for him.

We ran several errands after class. A year ago, I would even think about taking Nathan to one store, let alone 3, AFTER all the action at Hapkido, and AFTER playing board games. He impressed me. I knew I was pushing my luck though, and we headed home. He was starving again, and I didn't have any food that he was willing to eat.

He was starving and needed me to help him not have a meltdown. I parked him on the couch, with both of his weighted blankets--totaling about 25 lbs--and gave him the TV and Roku remotes. He watched mellow shows, as agreed upon--he was still pretty reasonable--but was super on edge. He expended an incredible amount of energy; I could feel him teetering on the edge of a very dark and very deep precipice. I knew he could go into meltdown mode if I didn't hurry and make something substantial for lunch. He ate a full plate of fried chicken nachos with avocado (not my tastebuds) and was pretty darn happy after that.

When Randy and Isaac came home, I was amazed when I's handed me a stack of cards--he told his teacher and classmates that it was my birthday AND last day of radiation. Mrs. L took time out of her day and her lesson plans and rolled with my kid and his excitement and they made cards for me! So honored. So thankful. Plain white printer paper folded in half make the best cards ever. The kids drew super heroes and lasers, hearts and flowers and rainbows. And the kid spelling--telling me I'm a sooper heero! Love it! Gratitude for Mrs. L and for the kids that are helping Isaac during our family Cancer Adventure. 

I left for my last radiation treatment, carrying a dozen cupcakes that Nathan and I made Wednesday. It was a homeschool project for us--reading the instructions that Betty Crocker kindly provided on the box. Measuring = math. Pouring = fine motor skills. Using the electric hand mixer AND moving the bowl around = using both sides of his brain simultaneously. Baking = chemistry. Using the oven properly = kitchen safety. He'll get there. He's not the Pokey Little Puppy. He's Leo the Late Bloomer. And it's ok.

I walked in the two sets of the sliding glass double doors and was totally surprised by what greeted me--a bouquet of balloons, a cupcake, and 2 cards! So thankful to Jen and Caitlin for stopping at the Cancer Center and dropping gifts for me. So thankful for Robin and Tess at the front desk and the birthday card. They were all thrilled with the cupcakes--because they have the type of job where people are not happy, and people are dealing with terminal illness, and energy levels can be quickly affected. I'm not sure they are thanked enough. So the cupcakes were my way of saying thank you for helping me. Rob, my favorite radiation tech, insisted on taking my picture. He said that in 20 years, I'll want to remember this point in time and that I needed a picture of me. I'm glad he insisted; I'm glad I listened. 

I stopped by to see Lynn the Radiation Oncology Nurse who also happens to be a Rock Star. I gave her a cupcake and gave her a hug. I thanked her for her dedication to her patients, and to me. We both got teary and promised to keep in touch.

I stopped by to see Florence--she was my Other Mother through My Cancer Adventure. My own mother was unable to come up; I get it...a flight from Tucson to Seattle, then a drive to Port Angeles is a big deal...and my folks are getting older. But Florence went to most of my chemo infusions with me, and brought fancy chocolate for after treatment was done. Twist my arm to eat chocolate! And, at her house on Thursday, she gave me some fancy chocolate, and a beautiful orchid in a vase. She's been a gardener for 40+ years and disclosed she's killed many orchids. I promised I would do my best to keep it alive. Typically I have a black thumb of death.

A quick drive back to Port Angeles because I also got to go to acupuncture; this has been an important piece of my cancer care. Pat has been fantastically supportive and explained every thing she did when she was inserting needles. For the most part, I don't feel the needles when they go in. Sometimes I do, but it's like a pinch and then it's gone. Ain't no big thing. Then I rested for 40 minutes--it was much needed. I did't go last week to acupuncture because Pat was sick; as a health care provider, she doesn't want to expose others--and for that I am so thankful. But last week was rough; and I'm thankful it's over.

And then I brought home Chinese food and used a gift certificate we were given--thank you whoever gave that to us back in the summer. I appreciate the birthday dinner! The leftovers fed us grown-ups again Friday night. Nathan had fried chicken nachos; I's ate pasta. I'm a short order cook a lot. But it's important for the Routine. Whatever, just eat, bitches. 

I also spoke with my folks Thursday night. I worry about them more than they know. Mostly I worry about Mom (mostly....) And while it was good to hear their voices, I know that I'm going to have to talk with my Dad at some point. Although I've not seen my folks in over 8 years, I can tell my Mom is starting to show signs of slipping. My Dad is planning to retire in about 6 months when he turns 65. He's been talking about retiring for the past three years, so we'll see what happens in May. He's probably already aware of Mom's mental health status; but we still gotta talk. It's not going to be easy; and I'll do it when I'm ready, when I'm feeling stronger. I'm the oldest; I'm the Health Educator and it's a major health issue; I discuss this topic with my students, and so it falls to me. 

I texted with my brother yesterday, too. I am thankful for him. He sent a card and a Wonder Woman magnet and told me about the gift certificate at Michael's. Randy and I are going there on tonight for dinner. We need a break and an evening out.

After Chinese food, Rand and the boys sang "Happy Birthday" and I blew out the candle on my cupcake. We each had 1/2 a cupcake, because nobody needs that much sugar before bed. Even though we ate late, the boys were still in bed asleep at their normal time: 7:30 pm. 

It's hard to pick a favorite thing about Thursday November 19, 2015, the day I turned 43 and am considered young according to my oncology team. The sun was out most of the day--that was a huge bonus! But a favorite--I'm not sure I have one. I'm quite pleased with myself in that I averted TWO meltdowns with Nathan. But really, I am thankful for the entire day: for the love and support of my husband and my children; for my friends who I've chosen to be my family; and for walking out of the Cancer Center as a Breast Cancer Survivor.