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Don’t You Think

July 21, 2016

I had just figured it out. After twenty years of saving & investing & living a little below my means, I was just starting to feel like things were coming together. I’d left my job and I was thinking that maybe I had figured out a way to not have to return to the work force and that I could spend my time with my kids & exploring a new city & traveling. And then I got cancer.

The call from the doctor was like an Alanis Morissette song. In that it was awful and I never want to hear it again.

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8 out of 10

July 19, 2016

There’s an ancient game on the iPad that I sometimes drag out & still play, even though I win almost every time. Occasionally I lose. Rarely enough to not be discouraging, but often enough to keep the game challenging. I started counting last week, and it turns out I win about 87% of the time. Those are better odds than the 70 -80% survival odds I have, but still in the same ballpark. Now whenever I play the game and win, I think “that’s one option, one runthrough, where I lived.” And when I lose, I think “and that’s the other option. In that one, I died.”

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The 12 Worst Things to say to Someone with Cancer

July 17, 2016
  1. Anything. Don’t say anything to us. Jesus. Ugh.
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Two outta three ain’t bad

July 16, 2016

The surgeon told me yesterday that in all his years of experience, the three most important keys to survival, all else being equal, on the patient’s side, were:

 

  1. General health/well being
  2. A strong support network, people to help out, etc
  3. Faith in a higher power
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Telling my daughter

July 16, 2016

We decided not to say anything to my son, ’cause he’s only five and really lives in his own world. But we had to tell the LBC, and so we did, together. Last night. Fortunately, while she’s old enough to need to know what’s going on, she’s young enough to still believe her parents when they assure her that everything’s gonna be fine.

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That didn’t go well

July 15, 2016

So, I just left the meeting with the surgeon and he was super gloomy. Really not the best bedside manner. He said that I look to have stage 2 cancer, with about a 70 -80 %survivability rate. He told me that cancer can be treated three ways (radiation/chemo/surgery) but that chemo was not effective on head tumors so really it’s radiation or surgery.

He’s having me do what’s called a PET CT scan, which is a more intense CT where they inject you with a dye that swarms towards tumors so he can get a more thorough picture of how big the tumor is. Also, he’s having me meet with a radiation specialist, because he wants me to make the most informed decision possible.  Additionally I have to meet with two other experts, a dentist & a swallowing expert because radiation might destroy my teeth and my ability to swallow, which brings me to

The downsides of radiation treatment:

It burns really badly and you have to have your head strapped still in one position for 45 minutes during the session, with three sessions a week for 6 weeks.

The burning gets so intense that if the tumor you’re having radiated is in your throat, then after a few weeks, about 90% of the patients can’t eat or drink anything and have to tap out, at which point everything stops and the timeline gets re-set, only now they have to first have surgery to implant a tube in your stomach which stays there for six months and has to be surgical removed. That tube is the only way you eat & drink and then they start burning your throat all over again.

When the treatment is over, your tastebuds & salivary glands & speech muscles & swallowing muscles are all destroyed and need a while to heal up and will never be as good again.

And finally: the radiation will also destroy your teeth, which, if they’re young and strong they can recover from, but if they’re weak they will get infections and pass those infections into your jaw.

So this made me pretty psyched to have surgery. Except for

The downsides of surgery:

He won’t know 100% for sure if he can do the surgery without having to remove TOO much of my head until he’s reviewed the PET CT scan, and even then there’s a chance that once he’s in my mouth feeling around he may realize that the tumor is closer to my jaw than he thought and abort the mission. So I could go in for surgery, go under, and wake up un-surgerized and sent off to radiation instead.

He may do the surgery (it requires the removal of nearly 1 cm of tissue AROUND the diameter of the tumor) and end up really damaging my ability to speak or swallow nearly permanently.  He can’t replace muscle, and it will just scar over with scar tissue.

After surgery they have to do what’s grimly referred to as a “neck dissection” which is a SECOND surgery where they carve out my lymph nodes on the side with the tumor and dissect them to search for any signs of cancer/pathology.

BTW, this isn’t a downside, but he mentioned that they use a tiny remote controlled robot to do the surgery because it will fit in my mouth, whereas in the past they would have had to split my mouth vertically, episiotomy-style, in order to fit the surgeon’s hands & a light & a camera in there, and then reconstruct my face afterwards.

So: next up is a series of meetings and then a decision. I was worried that this was a lot of time wasting while I have death growing in my throat but he said that the tumor was more than a year old and had been growing slowly and will not be materially larger between now & a couple weeks from now. He also mentioned that I had the right to refuse treatment and also that if I did so I would die. He was not what you would call “a cool doctor.”

 

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Cancer

July 15, 2016

About 8 weeks ago I felt the beginnings of a sore throat. It never got worse. But it never got better. Two weeks ago I felt a lump in the back of my throat, it was visible to the naked eye if you shined a light in my mouth. Ten days ago I saw a doctor. Eight days ago I saw a specialist, who performed a biopsy. Five days ago I had a CT scan. Two days ago, on July 13 2016, the specialist called and told me that I had cancer.

Squamous cell carcinoma; otolaryngology, caused by HPV strain P16. Highly curable, apparently. Later today I’m going to see a surgeon who will review the CT scan and tell me if I’m a candidate for robotic (!) surgery immediately or if I need radiation/chemo to shrink the tumor first. Either way, the specialist said this was the best bad news I could receive, and that the downside was that the next three months were going to be “bumpy,” in his words.

I’ll know a lot more after today’s appointment.  I have a five year old boy & a ten year old girl (the LBC on the cover of this blog). I haven’t told either of them anything. I don’t expect to die, but I’m worried. I’ve never had anything wrong before.  I mean, sure, I’ve gotten parking tickets or stubbed my toe, but I’ve literally never been the bad luck outlier.  No broken bones, never had general anesthesia, never had my appendix or tonsils or even wisdom teeth out, never had a serious car accident or accident of any kind, really. And now this.

I’ve known a bunch of people who had cancer. All of them lived.

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