Thursday, February 13, 2014

Better, but not Recovered

Robb Allen posted something yesterday about his father in laws last chemo treatment. He notes how he's come to understand that once the docs are done treating the cancer, you aren't exactly "cured"

You're better because you aren't dying any more, but you aren't recovered.

Your cancer goes into remission, but you're not cured.

 I've officially been cancer free for 1 year, 1 month, and 21 days (my doc declared me cancer free Dec. 22nd 2012).

The last six weeks or so, have been a very vivid reminder that while my cancer may be gone, I am by no means recovered.

I had multi-endocrine cancer, which had metastasized into my blood stream (there was extreme vascular invasion, but thankfully it had not gone lymphocytic).

The cancer presented as a primary thyroid tumor (which eventually grew to over 4" in diameter), with secondary lesions throughout my endocrine system, which caused my body to go haywire in many strange ways (this is called paraneoplastic syndrome).

We treated the cancer with surgery, and high dose radiation. No chemo thankfully.

Between the cancer itself, and the radiation, my endocrine system is permanently damaged. I no longer have a thyroid, and my other endocrine glands and regulating systems are shot.

They'll recover somewhat over the next 3 or so years, but will never work properly again. I'll be on hormones and endocrine medication for the rest of my life, and even then my bodies regulation will be erratic at best.

I am immunocompromised, even more than a year later. Over time it will improve somewhat, but I will likely always have some level of immunodeficiency.

Because of the radiation, I'm now infertile (most likely permanently, though there is a small possibility some slight fertility may return over time. It's also possible that doctors could harvest viable sperm from me, and we could conceive with IVF).

I now bruise easier, and don't heal as well. I have less energy overall, and I'm fatigued easier. My inflammatory response is completely out of whack...

There are mental side effects as well. It significantly impacted my memory, both short and long term, both retention and recall. I have far less focus, mental energy, and mental drive than I used to. My attention span, and depth, are both worse. I can't concentrate like I used to, nor can I split my attention like I used to. I've become absent minded, and now have difficulty remembering names, dates, addresses and phone numbers. I often can't recall words, names for things, technical terms etc... even for areas in which I'm an expert.

I've always been an insomniac, but its FAR worse now than it has been at any time in my life except my early teens (another time when hormone regulation is out of whack).

There's all sorts of relatively little things... but they add up.

Most of them should get somewhat better over time, though there's no way to know how much.

I the mean time though... at times it FEELS like I'm recovered, until I try to do things like I used to.

Then I get smacked pretty hard in the face with just how NOT recovered I am.

It's very... discouraging, disorienting... it's almost an alienated feeling; when you know this is something you should know, or be able to do, or were good at... and it's just not working.

Robb also talks about how some cancer patients, when their cancers come out of remission, decide to live and die as it comes, rather than go through more chemo or radiation.

I can understand that. I dont think that would be my choice, but I can respect it...

It's the choice my own brother made.

When he was 30, doctors found that Rob had developed a rare type of bone cancer, with lesions in his pelvis and femur.

When they found it, it was treatable.

The treatment would have involved cutting muscle away from bone, and excising the lesions in the bone (literally burning then grinding them out), followed by chemotherapy, and possibly radiation.

Even if the treatment were successful, it would have left him unable to walk, and either confined to a wheelchair, or at best using crutches; most likely permanently. No matter what, it would have been incredibly painful, with literally years of recovery time, to a life far more constrained than the one he had before.

And after all that, there was a high likelihood the cancer would recurr anyway.

Rather than go through that, my brother chose not to treat his cancer.

Rob died a few months before his 32nd birthday, from a combination of the effects of the cancer,  a septic infection which weakened his body dramatically, and an accidental overdose of the several different kinds of opiates he was taking (for the pain from the cancer and the infection).

There's no such thing as a good way to die from cancer, but my brother died as he chose to. That's better than nothing.