10.2cm, a graphical illustration

So, a month ago, I had a 10.2cm (slightly flattened sphere,) malignant tumor removed from my neck.

Intellectually, it's easy to understand that's about 4"... but just exactly what does a 4" tumor look like?

Well, today, Mel was at the fruit stand, and they had some pretty big honey crisp apples; and she noticed one in particular.

As it happens, a 10.2cm tumor is almost exactly this big; in fact, mine was almost exactly this shape as well (within 3mm):

Ummm... that's pretty damn big.

Ok, so... how big is it actually, in comparison to my neck?

This big:

Holy...!!!

How in the hell...

Seriously, I intellectually knew that I had a 10.2cm tumor in there; but until I saw the apple up against my throat I never fully understood what that meant.

Damn...

Whoever's writing this script... please call my office, I'd like to make some changes

So...

Had my surgical followup today.

More of our repeating pattern of "good news, bad news, worse news" really...

So, first... the good news...

The surgery was entirely successful, and I seem to have tolerated it well. I'm recovering a bit slower than typical, but I also had a much larger tumor than usual (in fact, much larger than they had estimated on the ultrasound), and there was more surgical trauma than usual. So, it's pretty much as expected, and nothing to worry about.

Also, it appears both of my parathyroids are functioning properly, and I have little if any nerve damage.

The pathology report came back, and according to my surgeon, it's a very good thing that they got it now; because they are calling this an extremely aggressive malignancy.

Actually, the surgeon said it was the most aggressive thyroid cancer he had ever seen (that hadn't gone lymphocytic); and that if they hadn't got it, I would have had at most a year, possibly only a few months, before I was in critical condition.

The other good news is, because of the pathology of the cancer, it's unlikely (though still possible) that I have one of the nastier variants of multi-endocrine neoplasia, which was thought to be a possibility. I have a variant of multi-endocrine neoplasia, with associated paraneoplastic syndrome, but not likely one of the variants that will almost certainly kill me.

Now, the rest of the news, which goes from bad to worse...

They got the primary mass, and they're pretty sure they got 100% of it, because it was well encapsulated...

Unfortunately, there was very extensive vascular infiltration, which couldn't be entirely excised.

Also, as was reported earlier I may have microlesions in my pituitary and adrenal glands (they're so small that even on a contrast MRI the tests are inconclusive without biopsy; they could just be noise)... Well, with the pathology and the vascular infiltration, combined with my symptoms and hormonal levels; you can consider that a probable, not just a possible.

What it comes down to, is that I still have cancer, with near spread confirmed, and distant but limited spread (into my other endocrine glands) probable.

At one point, my care team thought I may be able to get away without radiation... Now, it's clear that will not be the case.

In fact, because of the size of the tumor (10.2cm, and between blood, tissue, and blood loss during surgery, weighing over 3kg), the aggressiveness of the cancer, the vascular infiltration, and the distant microlesions; I am going to have to undergo an aggressive series of radiation therapy.

I will have to take from one to three courses of high dosage oral radioactive iodine (I-131), with injectable isotope markers (very different from the low dose therapy). The first course will take approximately three months (4-8 weeks of pre-radiation preparation, one week of radiation, then one month to recover), with each successive course taking another 4 weeks of preparation, and 4 weeks of recovery.

During each course of I-131 I will need to be in the hospital for 3-7 days, followed by 3-4 weeks of recovery prior to testing for the next course of radiation

The total series of radiation, recovery, and testing, will take from 3 to 7 months; depending on the results after each course of radiation.

So yeah... that's pretty bad... but at least there's a 94-96% chance of eliminating all cancer and preventing recurrence.

And then there's the side effects...

With low dose radioactive iodine, most people are able to work, and function, other than 3 or so days around the radiation doses themselves.

This is NOT low dose radioactive iodine.

For each course, I am going to have to spend 3-7 days in an isolation ward, during which time I will be radioactive enough to possibly make other people ill (as an engineer and someone who knows physics I say "no way, I know how low the effective dose someone else would get from me would be" but doctors are hyper-conservative about that sort of thing); and then 3-4 weeks at home while I recover.

During this time, I will be severely immunocompromised, and radioactive; unable to sleep with my wife, unable to spend more than a few hours a day in direct contact with my wife or children... for up to 30 days at a time.

I will also be extremely weak, experiencing moderate to extreme nausea, digestive distress, nutrient malabsorption, and extreme fatigue. It's likely I won't be able to stay awake for more than a few hours at a time without resting.

Oh and as an added bonus, there is a very good chance it will make me infertile, with at the very least permanently reduced (possibly even reduced to nothing) sperm count.

All while my pregnant wife is going through her second and third trimester.

So while my wife needs me most, I will be literally radioactive and not able to be in close contact with her...

Not sure if that's the worst news, or this is...

I can't work.

I have been medically unable to work for the past several weeks. I'm going to be medically unable to work for the next 3-7 months.

... and I've been laid off.

I was working with my employer as what is called a "contingent employee"; which means that although I was in general treated as a full time employee, I was technically a long term contractor with my employment contingent on my performance of contracted duties to my client.

I was not with the company long enough to obtain long term disability coverage.

I held off on making the announcement public while I was waiting for the surgery, because I didn't want people freaking out even more than they already were; and then until today, because I didn't know if I was going to be able to return to work immediately (in which case I had several very good prospects waiting) or if I would have to have some time off.

So as of a few weeks ago, I'm laid off, paying for COBRA health care continuation coverage at over $1000 a month (for the two of us), I need several hundred thousand dollars of cancer care, and my wife has 7 months of pre-natal care and a baby to deliver...

And I'm not going to even be able to look for work for the next 3-7 months...

So... Yeah...

...you know...

good news, bad news, worse news.

Pulling the Zipper

Well, here's the angry red zipper, pre pulling of the staples

...And post staple pull

You'll note, there's a three inch by five inch prominent swelling there; never mind the irritating from the staples themselves.

The actual scar itself is mostly in the crease and seems unlikely to keloid, but based on my other scars, it's going to be big, slightly ragged, and quite noticeable.

It's like a creepy smiley

The healing process, five days in:

If it looks unpleasant and uncomfortable, it's because it is.

You can't tell from this picture, but the areas above and below the staples are swollen out like balloons. I have no chin right now... just a bruise from the bottom of my beard to the staples, and then from the staples to the drain scar.

Oh and yeah, some of that yellow is the lighting... and some of it is the actual color my skin is right now.

Imagine someone taking a 2"x2 foot augur bit and running it down your throat a few times... That's about what it feels like.

The neck muscles that had to be stretched out of the way spent a couple days with no strength whatsoever... Which meant I could hold my head up about as well as an infant... but now they're healed enough that it just hurts like a sonofabitch.

The worst thing though is still not being able to clear my throat or cough properly... particularly given that because my throat and lungs are both irritated, that I'm overproducing mucous.

I am drinking HUGE quantities of water and fruit juice, and eating lots of soup, pudding, and ice cream.

I am eating some solid food now, and swallowing isn't too bad, it's just the throat abrasion and mucous that're giving me a problem.

My voice...

Well, let's just say, Wednesday I did pretty good renditions of "Everybody Knows" and "Romeo is Bleeding".

Let's hope next week I have a voice back.

The good news?

Both my parathyroids survived, and my calcium seems to be ok. Also, I'm not back on the diuretics yet, but my excess dependent fluid is already dropping dramatically. That's even though I'm eating and drinking TONS of salty soup, and tons of fluids.

So yay, that's a very good sign.

Overall... Man it's hard to describe how much major surgery takes it out of you... Tuesday, the day after the surgery, I felt like I'd been put in a sack and beaten with ball peen hammers for a few hours.

Today... I feel like the beating only lasted for an hour or so.

Here's hoping Monday sees me feel like it was only wiffle ball bats.

Now I just need some neckbolts

15 staples, 5" incision. Should be a hell of a scar.

What you can't really tell from this photo is that basically all the tissue shown in this picture is just one giant  swollen and tender bruise.

Basically, I feel like someone stuck a concrete mixer down my throat and turned it on high.

I'm hoping the pathology people got a picture of the tumor like I asked them to. I know they weighed it (I should get the pathology report tomorrow or Thursday) and that they drained almost a liter of blood out of me pulling the damn thing out; and that it was more than 100mm in every dimension, and roughly spherical (but fully encapsulated, mobile, and free. It hadn't infiltrated anything).

Somebody snuck in and cut my throat while I was sleeping

So, I'm alive, awake, breathing OK, I feel like crap, and I look like this:

And up close and personal

So, the tumor was apparently MUCH larger than they thought, the doc having described it a "about the size of a softball", which is about 4" sphere; and having a very extensive network of blood supply vessels. So instead of the usual 2" or so incision, they made an over 4" incision; and they had to install a surgical drain for the blood.

Yeah, it's gonna be a hell of a scar.

I was intubated (with a surgical airway) for the procedure, as planned; and with the large deflection of my airway, and the pressure on it, said intubation was quite rough on my throat (also as expected).

I can speak... mostly... though barely, and croakingly, and it HURTS. Swallowing, HURTS. Breathing isn't exactly pain free for that matter. Coughing... very very bad.

And, because of how much stretching, cutting, and moving things around they had to do, all the muscles in my neck also hurt, and are strained and bruised; particularly the ones directly around my airway.

You'd be amazed at how much you use those muscles for... like, say, holding your head upright, coughing, clearing your throat, moving your body in any way etc...

It's not all bad though...

These people really know how to run a hospital. I'm at Sacred Heart in Spokane, and I've never had as nice a hospital experience in my life. The people are great, the attitudes are great. They let mel sleep next to me last night, even got her a cot... Heck even the food is actually good.

Oh and this is the view from my hospital room:

The doc will be in here in a few minutes, and hopefully I'll be able to go home later today. I'll keep you all posted.