Sunday, April 4, 2010

Contemplating Quitting Radiation

i'm considering quitting radiation. i've now had 10 radiation treatments, and i'm "supposed" to have 33, but i'm not sure if i can do this 23 more times, nor am i convinced i NEED to.

i've already blogged about problems i've been having with radiation, but a brief re-cap:

day one - broke a tooth right before the appt and cried through it.
day two - asked if i could please wear my street clothes into the room instead of the gown and then just take my t-shirt off, and was told NO. i sit face to face with the "CAUTION: HIGH RADIATION AREA" sign and freak out.
day three - had a MALE tech poking me, and had to remind the rad. onc. for what felt like the millionth time that that's not okay. rad. onc. stares at my naked breasts and asks the techs, "should we use the wire?" and one of them gasps in reply, "no! it's only her 3rd day!" and i FREAK OUT, remembering the trauma of the wire shoved deep into my breast before my surgery. the nurse tells me to stop drinking my beloved chickweed tea, and can't give me a reason why.
day four - the techs, rad onc, and physicist were all questioning/seeming to doubt my treatment, for the 4th day in a row, talking OVER me instead of TO me. one of the techs asks me conversationally, "so, are you a college student?", and it bothers me that these people i have to put incredible trust in don't even know basic info such as the fact that i'm a decade older than they think.
day five - i tell them i'm not getting back on the table till the doctor explains to me what's going on, and why my treatment has been in doubt all week. he explains it to me, and adds, "yeah, i could tell by the look on your face the other day that you were getting worried..." but he didn't think to try and alleviate my worry at the time?? great way of developing rapport with a new patient. way to go.
day six - no issues, surprisingly, other than i still hate the gown.
day seven - my big moving day. u-haul gets a flat tire in the rain, i have to reschedule radiation, and show up water-logged and filthy. driving an hour RT for 44 seconds of radiation is a pain in the butt.
day eight - treatment is followed by my required once-a-week meeting with the rad. onc. he stands against the far wall, clutching my chart, looking at me awkwardly, like he's worried that i will bite him. clearly he doesn't like our weekly meetings any more than i do.
day nine - like nearly every day, the techs have to remind me to "relax down into the table," because my body is always so tense i'm subconsciously arching my back, and this makes it difficult for the field to be correctly set up.

and then, the part i hadn't blogged about yet -
day ten - i actually got in a fight with the techs over the gown issue, embarrassing as that is to admit, and ended up in tears over it. :( i showed up in a very simple t-shirt with NO bra even, and had no purse/personal items to store in a locker, and asked, PLEASE can i just go into the treatment room the way i am and take off my t-shirt there. they again said NO. i asked WHY, and they had no answer - just said "it's part of our procedure here for breast treatments." i said, but it's so unnecessary for me to change into the gown just to walk 20 feet and take it off again, and it makes me feel like a sick person every day when i'm not, and just going in in my t-shirt would save us all time, and save laundry, and why does it matter so much?? i was crying, and all they would say is, "i'm sorry you don't understand the reasons for the gown." and i cried through the entire treatment, with the tears running down into my ears as i was unable to wipe them away because i had to keep my arms very very still above my head. it's quite difficult to hold my body still for the radiation when i am crying. at the end, one of the techs came back into the room and asked in this fake cheerful voice, "how's your day going, britta?" still obviously crying, i said, "badly!" why would she even ask that to someone who's in the middle of crying??

i practically fled the building. and all weekend i've dreaded going back. i'm going to at least go to my appointment tomorrow, but i don't know if i'll actually agree to get irradiated. besides all of those problems i've been having with rads, my BIGGEST problem is that i flat out don't trust the rad. onc. or the treatment plan. it makes no sense to me that EVERYONE supposedly needs 5-7 weeks of a uniform dose of radiation, regardless of one's cancer type, tumor size, stage, grade, lymph status, margin size, age, general health, etc. logically, these factors SHOULD make a difference and radiation SHOULD be individualized based upon them. the rad. onc. told me that these factors don't matter and the uniform amount of radiation is what's been shown to be effective for all. i just can't accept that. it's more likely that the reason everyone gets the same dosage is because in order to avoid lawsuits, rad. oncs need to never prescribe less than the standard of care, and because hospitals/doctors don't have the TIME to individualize each person's radiation plan in this way because there are just too many patients to process. these reasons for not individualizing treatment may be valid and true, but still. the lack of individualized radiation plans does not mean that everyone DOES benefit equally from/require the standard radiation treatment. i'm not convinced that the prescribed 33 radiation treatments fits me any better than the stupid "one size fits all" gown does. maybe 10 rads treatments IS all i need, or maybe it's 12, or 19; no one can really KNOW, not me OR the rad. onc.

after my 3rd surgery, i got a thermogram at sojourns, and surprisingly, it showed that my breasts are very healthy and functioning well!! imagine that!! and of course, a thermogram done NOW would show that my breasts are a total freakin MESS, thanks to 10 days of rads. i just can't get myself to understand that radiation is a GOOD thing, when normally, radiation is so bad and dangerous. the big "CAUTION: HIGH RADIATION AREA" sign on the treatment room door makes me want to run the other way, not go in there and lie half naked on a table so strangers can irradiate me on purpose. i am filled with so much anger, fear, and negativity every day when i am there... i can't help wondering if all of that negativity is counterproductive to the treatment, or if the benefits of the radiation really outweigh all the emotional distress it's causing me.

and i fully admit that i CANNOT hear my intuition's voice right now. it is too muffled by the depression & anxiety that is creeping in. i can't tell which voice is which. i don't know if the reason i'm so strongly against radiation and have been all along is because my gut knows that it IS bad for me, or at least unnecessary, and i should trust the thermogram that my breasts were happy and healthy without it... or if it's just FEAR bullying me out of radiation, and really i DO need the radiation. and i hate not having enough time to figure it all out, because radiation is EVERY DAY, RIGHT NOW. either i do it, or i don't.

i'm in the process of contacting as many of the people on my treatment team as i can to ask more questions and get more info, and i'm getting therapist recommendations, and we'll see how it goes. i want to ask again exactly what they think my risk of recurrence is both with and without radiation. and is there any way to determine what my recurrence risk would be after only doing 1/3 of the prescribed rads treatments? (and would i believe it anyway?) how much of a risk am i willing to live with?

right now i'm just so emotionally exhausted by it all.

3 comments:

  1. What does your mom think about it, B?

    I wonder if the prescribed dosage is grounded in some kind of universal cellular-level data, and the rate of recurrence in each cell, rather than an individual's cancerous growth size, etc. (after all, the radiation is targeted only on the cancerous area, adjusted for each patient).

    That would be a strong argument in favor of continuing. Because the other stuff (staff issues, gown &c.) although it's very stressful, is also very temporary, and matters WAY LESS than your long-term health. Even if it's freaking you out a lot right now!
    But it would be good to get some hard data about it, from someone medical.
    Thinking of you...and keep updating! :)
    -Julie

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  2. Brit, what if you purchase your own gown (from the section of a store that older women shop at) that has snaps down the front (or ties) and it can be your own gown and not on of theirs. I'm just thinking that perhaps there is a balance to the gown fight. You wear your own gown and therefore its not one of their 'sick person gowns'???

    I really wish this was going better for you; they truly seem to have no people skills whatsoever and the compassion seems to be nonexistant - expecially at such a stressful time when our natural coping skills would be maxed out.

    Good Luck at tomorrow's session.

    Erin

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  3. i agree with what julie said... and yes, remember that the jerkwad radiation doctors/team are temporary.

    remember that EVERY OTHER person in the waiting room is going through the same thing as you, and don't care if you're a sick person or not. In fact, they are probably sicker than you are... They have to wear the same stupid gown and put their stuff in the locker just like you, for 44 seconds of stupid radiation.

    but yeah, their people skills suck. If they make you uncomfortable, make THEM feel uncomfortable... keep going :)

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