Saturday, June 25, 2016

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 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 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'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 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. 

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