Friday, May 20, 2016

Not Again

Not again.

Please.

I have had enough.

My husband and my children have had enough.

My mother-in-law has had more than her fair share.

Just...stop....please!

Stop the ride, I wanna get off.

Randy has cancer in his tonsil, and it's not related to his voice.

He has two--TWO--otolaryngologists at Swedish hospital. And they each specialize in different areas of the throat.

Seriously. I had no idea that this was even a thing. Either cancer of the tonsil OR specializing in different areas of the throat.

And clearly both of these Fantastic Physicians are on The Spectrum. Because when you're dealing with something that's THIS freaking specialized...you're on the higher functioning end of The Spectrum. I kinda can't help it...I have Spectrum Shades. They totally skew my world view and cause me to see autism in everything.

Both of the Fantastic Physicians have impeccable bedside manners. Seriously. They are awesome. They are a team.

The first one is the Lady ENT, who Randy's been seeing every couple of months since November. She is a voice specialist, and is dealing with the vocal cords. He originally saw her the Monday before Thanksgiving, which was the Monday after I finished radiation treatment for breast cancer. I was able to participate in the meeting via FaceTime. Thankful for the technology and the fact that the Lady ENT didn't bat an eye at the way I was able to participate.


So, when Randy saw her in November, she numbed his throat, and stuck a camera up through his nose and down into his throat. The Lady ENT educated us about the fact that Randy's talking with his false vocal cords; something we didn't even know about until he got to Swedish (don't get me started about how the ENT in Poulsbo failed him). 


She also found that there were nodes on Randy's vocal cords. I asked her directly if she thought they were cancer, and she said, while she can't determine that with 100% certainty without taking them off and sending them to pathology, she did not think they were cancerous. 

I trust her. I believe she was correct. Also, that's not where the cancer is. The cancer is in his tonsil. Vocal cords = front of the throat. Tonsils = back of the throat.

The Lady ENT also directed Randy to see a Speech Therapist, which he was able to do in Port Angeles. And, as nice as the Speech Therapist is, and as much as he wanted to help, the bottom line is he is out of his league with Randy and his voice issues. It's not the Speech Therapist's fault; he primarily sees kids who need help enunciating words; not middle-aged men who are loosing their voices.

Randy goes to a massage therapist, who is amazing. She helps with the stress relief, and it feels good for him. The Lady ENT supports this. We learned that Randy does indeed carry his stress in his back, shoulders, and neck.

He also has exercises...stretches...that he's been directed to do to help release the muscle tension in his back, shoulders, and neck, and he does these daily...or maybe twice a day. I'm not really sure because it's not my job to do his exercises for him.

The bottom line is that Randy's tried three different treatment modalities and his voice hasn't improved. So...

He went back to the Lady ENT in February, just a check up. She scoped him and saw that the nodes looked the same. We talked about surgery and removing the nodes...but until Randy learns how to use his regular vocal cords, not the false vocal cords...removing the nodes is pretty pointless because they will likely grow again. They are like scar tissue.

And if she were to do surgery, he would not be able to talk for 10 days. So, because Randy uses his voice--as most college professors do--we decided that if surgery happens, we'll shoot for summer, when we have less on our plates, I can get the boys out of the house for extended periods, he can have the quite time and recover. 

But there's been a shift...

On March 11, Randy's 48th birthday, he was in his truck and he yawned, he happened to look in his rear view mirror at the same time, you know, like you do...and noticed a white spot on the back of his throat. It didn't hurt. We kept moving forward, knowing it was there, keeping an eye on it. 

While I was in Tucson at the end of March, Randy took Nathan to our family doc for a follow up from N's appointment with his neurologist (because we ALWAYS follow up with our primary doc when we see a specialist--it's just what we do). And the doc asked Randy what's going on with his voice...and Randy filled him in...and our doc had Rand open his mouth...and he said, basically, tell your ENT. 

And in the parking lot at the dojo, Randy bumped into our dentist, because his younger son, who is the same age as Isaac, also practices Hapkido and we live in a small town and our dentist and his wife are friends of ours...and our dentist asked how Randy's voice is...and Randy told him about the spot...and the sun was out which let our dentist easily take a look...and he said, basically, tell your ENT. 

So Randy told the Lady ENT when he saw her April 23rd, which was his next scheduled appointment. But it's not like she wasn't gonna notice it. And she ordered a CT with contrast. And our local hospital said, "you're ok, don't worry!" Wait. What? Well, um...ok.....

But when the Lady ENT saw the results, she put Randy up a level. Because she's seen this before. And she knows what to do. Thankful for her. So so so thankful for her.

So the next level...he's now with the Man ENT. Who specializes in cancer of the head and neck. 

Not again. 

No. 

Not cancer again. 

Fuck.

Please. 

We need a break. 

And so Randy and I went to the city on Thursday May 5th. And the boys stayed home. By themselves. Abby is a good dog. She's responsible. KIDDING! The Momma A-Team picked up the pieces of our life...and we didn't worry about the boys. 

And the Man ENT said, basically, "we need to biopsy this to know for sure...but it looks like cancer...because if it walks like a duck and talks like a duck...and you need a PET scan and we'll just call it cancer so that you don't have to wait on insurance...see you after your PET scan next week...yes, we'll have the results of the PET scan."

So the four of us went. Because we're a team. And we dropped Randy off at Swedish. Because for all of us to go in and then for three of us to go out would've been too much for Nathan. Too many transitions are hard in Autism Land. But really, it would've been too much for all of us. 


And I took the boys and we played hard. We went to the park at Seattle Center. We went to the Pacific Science Center. We learned that mole rats are immune to cancer and are used in research to find cures for cancer. We were together. We laughed. We talked. We don't want to do cancer again. But I told them, basically, "you guys got me through my cancer, and we'll get your dad through his cancer."

Little boys shouldn't have to deal with such heavy medical issues. Fuck you cancer. Fuck. You.

But in my heart, I was terrified. I was scared that the PET scan would show that Randy's body was littered with tumors that were untreatable. That no amount of chemo or radiation or medical marijuana oil was going to help save him and preserve our life together. I was terrified that this fucking disease was going to rip a loving, involved, patient father from two children.

We went back to Swedish hospital, where we met Randy at the Man ENT's office and the boys played with their iPods while we went in to meet with the doc and we were told that Randy has cancer of the tonsil caused by the Human Papillomavirus, or HPV. 

The PET scan showed that Randy's cancer is only in his tonsil and only a couple of lymph nodes are involved. There's a spot on the upper lobe of his right lung, which is the same side as the cancer in his tonsil and lymph nodes. The spot on the upper lobe didn't "light up" from the contrast Randy had to drink when he had the PET scan. The doc is going to watch it...he'll order a CT in 3-6 months.

But his cancer is caused by the same virus that causes genital warts. The same virus that causes cervical cancer. 

No, this has nothing to do with his vocal cords. 

Opposite sides of the throat.


Tonsils = back of the throat.

Vocal cords = front of the throat.

Yes I'm scared that I have cervical cancer. But I likely don't. Hopefully I don't. I'm not calling down the fates.

And, seriously, I had so much chemo shoved in me that I...don't even want to go there......

But I'm getting a Pap smear in June, which I scheduled before Randy was diagnosed, because you know you gotta make a doctor's appointment months in advance for a pelvic exam.

The Man ENT concluded that it is cancer caused by HPV because Randy doesn't smoke cigarettes and doesn't drink alcohol. And because the Man ENT has seen this type of case countless times. He's got a lot of experience with this type of thing, which is helpful, psychologically, for both Randy and I.

No. My husband didn't cheat on me. The thing about viruses, that shit can cook in your body for years. YEARS. 

You can get infected with HIV in your early 20's and not have symptoms until your in your mid 30's. No shit. 

So this HPV infection...it's something most of us carry. According to the Centers for Disease Control and Prevention:

"About 79 million Americans are currently infected with HPV. About 14 million people become newly infected each year. HPV is so common that most sexually-active men and women will get at least one type of HPV at some point in their lives."

Seriously?

Seriously.

The Man ENT sees so much tonsilular cancer he's called it "an epidemic".

The thing is though, there's no test to find out if you're a carrier. There's a test of HIV, but not for HPV.


And I bet I'm a carrier.

I wonder if I transmitted the Human Papilloma Virus to my husband.....

I'll probably never know.

So I'm trying to not worry about.

Christ knows I've got a lot of other shit to worry about.


Anyway. There are over 150 strains of HPV and only two of them are known carcinogens. Strains 16 and 18.

How do you prevent the HPV infection? 


ABSTINENCE!!!

Right?

Because people don't have sex.

ABSTINENCE!!!

Stops babies from being made.

I'll stop before go off on more of a tangent....


You can use a condom consistently and correctly every time.

But, shit happens and you forget. Heat of the moment. Drunk. Stoned. Careless. College. High school. You're my everything...at age 19...17...15.... Yeah. And so fast forward 30 years and you're fighting tonsil cancer.

But, why do we put all the emphasis on cervical cancer? 

Because there's a world wide war on women happening.

It's not just in the US. 
 
But it's not the point of this blog post.

The point is, we don't put tonsil cancer as a risk because it's not sexy.

Tonsils don't sell.

But cervices sells.

And the cervix is in the vagina and vaginas are taboo to talk about so naturally when we talk about the vagina it's a little sexy...it's a little controversial...it's a little easier sell on the public than a fuggin TONSIL.

Can you see the ads?

"Prevent tonsil cancer. You too can protect your husband!""

vs.

"Prevent cervical cancer. You too can protect your wife!"

NO! Because vaginas are fun to talk about!


Throats, not so much....

And, let's face it, the media portrays women as the weaker gender...needing protection. Bullshit.  

Ok...back to the HPV.....

What else can you do to stop the spread of HPV?

You could vaccinate your kids!!!

Wait! What?! You can PREVENT the spread of HPV by giving your child a shot?

Yes. Yes you can.

Actually, there are a series of three shots, given about a month a part. 

According to my students, the shots hurt like a motherfucker. Well, that's my expression. They said the shots hurt A LOT. And we always make things out to be worse in our mind than they really are....


Who should get vaccinated?

According to the CDC (under the heading Who Should Get Vaccinated)....

All boys and girls ages 11 or 12 years should get vaccinated.

Catch-up vaccines are recommended for males through age 21 and for females through age 26, if they did not get vaccinated when they were younger.

The vaccine is also recommended for gay and bisexual men (or any man who has sex with a man) through age 26. It is also recommended for men and women with compromised immune systems (including people living with HIV/AIDS) through age 26, if they did not get fully vaccinated when they were younger.


Will I vaccinate my kids?

Lemme rephrase that question.

Do I anticipate that my kids will have sex?

Yes. Yes I do. 

I'd bet money on it.

I expect my kids to have sex.

Not today.

Not tomorrow.

But some day. Yes. Absofreakinglutely.

And hopefully they'll be as safe as possible.

So, yes, I'll vaccinate my kids against this disease.

Why wouldn't I? 

But why vaccinate at age 11?

Because according to Cavazos-Rehg, et. al. (2009, Nat'l. Inst. of Health)

"approximately 7.1% of American youth report sexual debut prior to 13, with more male than female youth reporting early sexual debut; by age 16, approximately 30% of females and 34% of males have had sexual intercourse."

And, ya know...I just don't want to risk the fact that should one of my children be part of that 7.1% who starts having sex PRIOR TO the precious, yet misperceived invincible, age of 13...but if that's what happens, it is out of my direct control, even though I'll communicate as effectively as I can that we need to wait to have sexual intercourse...until we know it's the right time for us...or we THINK it's the right time for us....

Regardless, it's an ugly world and people do really fucking awful things to children...and if I can do my best to prevent my child from being harmed in this way...if I can help prevent him from having cancer...from having to worry about disease any more than he already has on his plate...and I'm talking about both of my sons...then, yes...they'll receive an inoculation.

The fact remains, however, that my husband has cancer.

And we gotta gear up for surgery.

And when you get your tonsils removed when you're a grown up, it's a big fuggin deal. Two night minimum at Swedish. They won't release him until he can swallow water. 

My family will be separated. Christine and Jeff will have the boys for the duration. And Bonnie and Mark are helping. And Priya. And maybe Laura.

It takes a village.

I hope that we're only gone a few nights. We're going over the night before the surgery. I'm staying in a hotel that's on the same city block as the hospital while Randy recovers.


Because I'm recovering, too, and will need to rest and take care of myself.

And he'll be off from work for 2 weeks, minimum. He's preparing to be gone for the remaining 3 weeks of the quarter.

I'm proud of him for looking that far ahead. I know it takes a lot of courage to face cancer.

I have faith that he'll be ok.

And we'll cross the next bridge when we come to it.

We do not yet know what type of cancer treatment, if any, Randy will require.

2 comments:

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