Friday, September 6, 2013

The stuff they don't tell you



A week ago Thursday Jeannie had her first chemo treatment. Leading up to this everyone simply flatly said you’ll lose your hair. “But it will grow back”.  “Often thicker than before”. Well to a male bystander who’s been follically challenged most of his adult life this is low impact. I knew she’d lose her hair. Didn’t really faze me. Fazed her though. For a girl with long blonde hair it was devastating. This was HUGE. But all these people who assure her that they’re there for her seem to keep leaving out details. And for the past two days we’ve been busy with a little investigation work, and getting over some anger.

Seems for some time now there’s been a cold cap therapy that’s done at the same time as the chemo. Doesn’t work for all cancers or therapies. Doesn’t work in all instances. But has been used around the world (not FDA approved in this country of course but there aren’t any big pharmacological companies campaigning for it either). It’s also been used for years and years. Such that anyone working in the cancer field is either very familiar with it or has been snoozing under as rock. Plenty of centers in other states clearly support it, participate in test programs and so forth. None in Ohio though. Glad they all advertise how cutting edge they are.

In a nutshell the way this works is you wear a cap that cools your hair follicles to protect them against the damage caused by the chemo. You cap up before during and after treatment. It’s supposed to happen with the first treatment and you change the caps every twenty or thirty minutes. Aha, a bit of an inconvenience for infusion centers. But from all evidence lots of them cooperate. A patient who looks better feels better. I’ve heard repeatedly how much better a certain person would feel if she looked in the mirror and saw herself rather than some “circus freak”.  Or can go to the store and not have people look at her and realize she has cancer. Makes sense doesn’t it? But of all these people who are “there for her” not one brought up this possibility. There is an expense. It’s not necessarily covered by insurance. But it’s not something we can’t afford. And a lot of people have blown any sense of trust we might have had in them. They’ll be told, bluntly but politely when we show up for Thurdays treatment with caps on ice. As her friend with thyroid cancer told her when she started down this path “you’ll find you’re all on your own”.

She’s done plenty of internet searches since this started and has learned a lot. Of course with the internet you have to filter out a lot of crap. Lord knows the internet pumps out crap by the ton. It makes  television look like a chump. But we’d both accepted the baldness as fait accompli. Well her hair has been hanging tough and though the cap people said they can’t make any promises we’ll give it a try. Not much to lose at this point. Maybe she wins. But I could name for you a lot of people who’ll never win back her trust. I figured this out about her from right around when we first met. Burn her once and you’re done. No second chances.

Something else we’ve found is that people who might want to post a comment in the comment section can’t necessarily do so unless they have a Google account or something. Still trying to figure that one out but in the meantime feel free to email us if you’d like, we read ‘em all and all are appreciated.   

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