Thursday, August 23, 2012

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


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... know...

good news, bad news, worse news.