Tuesday, April 27, 2010

Not enough hours in the day!!

Okay, maybe 10:30 pm when I'm ridiculously tired is a bad time to be writing this post,BUT... I've been thinking. I feel so overwhelmed by all of the different things I'm trying to do for my health, like there just isn't enough time in the day to do all of this stuff AND HAVE A LIFE BEYOND IT! Every day, I am "supposed" to take about 15 supplements, brush my teeth, floss, clean my recently-crowned tooth with baking soda, use a smaller toothbrush to clean around my wisdom teeth where my regular toothbrush can't reach, clean and wear my mouthguard at night to protect my teeth when I grind them, do these jaw massage exercises to re-align my bite, do ear pulls to help my ears un-block, grind flax seeds and put them in my food, go to radiation, shower, put aloe on my breast 3-5 times per day, put sunblock on, walk/exercise for at least 30 mins, cook and eat vegetables, meditate, sleep at least 8 hours (more like 9-10 right now). Semi-regularly, I'm supposed to use a neti pot, gargle with herbal tea (for my enlarged tonsils), get chiropractic adjustments, meet with my oncologist, meet with my naturopath, go to therapy, pee in a cup, get blood drawn, etc., and tomorrow I'm getting another thermogram.

It feels like TOO MUCH!! I don't how HOW to fit it all in, when I'm also trying to be a normal person and do things like work, complete the typical errands that we all have (bank, post office, etc), keep my living space semi-clean, spend time with friends, etc. It feels like taking care of my body is a full-time job! Sorry, no, I can't go see a movie with you, because after I sleep for 11 hours, I'll be busy gargling and flossing and swallowing pills and rubbing various substances into my skin and steaming vegetables and pulling on my ears and reading cancer books and massaging the stress out of my jaw and then rushing off to radiation so I can come home and nap again and have nightmares that my therapist will want to hear about in an hour after I get my chiropractic adjustment while eating the rest of my kale during the drive over, thankyouverymuch!

RRRAWWRRRRR!! Fsadhfkdhaskf;awieurhufa;hsa;

Zap Zap Zap ZZzzzz

So, I haven't actually written about radiation in a while, have I.

I'll tell you what it's like now -

Today was number TWENTY-FIVE! I only have EIGHT left!! The fatigue has really kicked in. I now feel heavy with exhaustion starting at about 8 pm. It gets hard to form sentences, and I feel like things take me 3 times as long as they should, and I feel like I'm underwater or something. It's a different kind of fatigue than I'm used to. I find myself attempting to write emails and instead just sitting here, staring blankly at the monitor, wishing so much that my thoughts would magically appear on the screen so that my fingers didn't have to expend the necessary energy to type them. It's pretty pathetic! I'm clumsy lately, dropping things all the time, like my pedometer, which I broke. I left my umbrella somewhere downtown, which is so not like me. I have to make myself really specific lists, otherwise I forget stuff.

Last night, I slept for ELEVEN HOURS, in a cashmere sweater because that's what feels best on my burnt skin right now. My skin's doing okay, overall. I think it looks pretty icky, but the nurse said last week that it actually looks much better than others' breasts at this far along in treatment, so... whatever.

Right now I'm doing that thing where I stare at the monitor hoping for my thoughts to magically appear. Because my fingers are having a hard time typing my thoughts, and they're rapidly dissolving from my sleepy brain anyway.

Friday, April 23, 2010

WHAT THE CLUCK?!

Have you heard? The Susan G. Komen Foundation is partnering with KFC - KFC is selling pink buckets of carcinogenic chicken to raise money for breast cancer research. APPALLING. Here's the June 2009 newsletter of the Physicians Committee for Responsible Medicine, about the carcinogenic substances found in KFC's grilled chicken, which KFC is currently being sued over.

Breast Cancer Action
(BCA) has started a letter-writing campaign to KFC and Komen to protest this, demanding that Komen only partner with companies that do not manufacture products that contribute to cancer. (Um, DUH?? I can't believe Komen even needs to be ASKED that!!) Here is the pre-written letter you can add your name to. It's super quick - please sign!! I edited/added to the letter to give KFC and Komen my own thoughts; I'm really on a rampage with this one. I don't know why this, in particular - when there is SO much stupidity and injustice in the world everywhere you turn - has me so riled up, but it does. I told both KFC and Komen that I'm girlcotting them, but it's not like I ever went to KFC anyway. I'm at home eating my local, organic broccoli. KFC claiming that by selling fatty, hormone-filled, carcinogenic chicken breasts they are helping save MY breasts pisses me off.

As BCA points out, this partnership is doing way more for KFC's bottom line than Komen's. And it is appallingly hypocritical of Komen to claim to be trying to end the breast cancer epidemic by partnering with a company that contributes to it.

Hoopla

Okay, this cracks me up. This is the paper that my naturopath wrote her instructions to me on:



Yup, that's right, along with gargles, ear pulls, chiropractic, and another thermogram, my doctor has ordered me to keep hula-hooping!! HAAA!

Thursday, April 22, 2010

yet another way in which i am weird

i wonder if this is some kind of disorder?

i've been thinking, about how i can't stand having anything fake/chemical-y/unnatural in or on my body. i'm not sure how to explain it. but it FREAKS ME OUT. it was yesterday's crown that got me thinking about it all, because there was this moment when the dentist paused to let me rest my mouth for a while and i reached for my tooth with my tongue and felt that there was practically nothing left of it, and that's when i realized i would be getting a FAKE TOOTH, and i could feel the tears starting to press at the back of my face. i took a bunch of deep breaths so i wouldn't cry. because my automatic reaction was to freak out, not so much about the pain or whatever, but about something fake being about to go in my body! i calmed myself down by reminding myself that it's a good thing, it's a fake tooth but it will help me eat/has a great purpose, so it's GOOD.

but that got me thinking again about how i almost chose to have a bilateral mastectomy, and how upset i was by all the people who assumed i'd get reconstructed breasts afterwards or kept asking me about that, because i so strongly would rather be flat-chested than have FAKE breasts. i would never ever put myself through dangerous, painful, medically-unnecessary surgeries to get fake breasts that would essentially just be for appearance's sake, since they wouldn't have feeling.

my inability to have anything fake in or on my body reaches far. i hated my braces so much when i was a teenager, again, not because they were painful, but because they were fake - i have journal entries about this. i hated having this metal/foreign substance in me 24/7 for years, and when i finally got the braces off, i was SO SO HAPPY and relieved that i cried so hard on the way home i had to pull off the road!! i do not wear make up or jewelry, have no tattoos or piercings, use only natural soap/shampoo/toothpaste/etc, resist medicine as much as i can, etc. i only wear shoes when i absolutely have to, and have for years been known as the barefoot girl - i even went to classes barefoot in college, until the first frost every year. my favorite place to be is the michigan womyn's music festival, where i wear nothing but underwear, as much as the weather allows for that. i have never done drugs, or smoked, or had an alcoholic drink. i think i've dyed my hair maybe 3 times total in my life, and that was years ago, and it was temporary.

i wonder why i'm like this. the exception to all of this is being in costume - that, i love. but in my normal daily life, i really can't stand anything unnatural in or on me, and it's not a conscious thing, really... it's just...the way i am. yet another one of the ways in which i'm really weird. i'm just hoping that i don't end up needing, like, dentures and a hip replacement someday, and freaking the hell out!! this also partially explains why radiation has been so emotionally unbearable for me - i feel like it's this invisible monster invading my body...something horrible going into my body that really really shouldn't be there.

Wednesday, April 21, 2010

tooth reexcision

i'm skipping radiation again, but this time, it's because i'm on cape cod for dental work. sadly, i was so excited about this. but...

i severely misunderstood what getting a crown on your tooth means. i was naively picturing something like popping a cap on a tooth, the way you pop a cap on a pen. i had no idea it actually means being stuck in the chair for 2 hrs while someone drills your entire tooth down to the bone, making it sound like there’s a jet engine in your head, while you try not to swallow all the blood. he told me he had to drill more than expected, because when the root canal had been done several years ago, the decay was right up to the bone, so today he had to drill a little bit of bone in order to get around it and seal it off. my brain automatically interprets this as, “oh, couldn’t get clear margins, again.” like it was a tooth reexcision, minus K and the IV of happy juice. calling it a “crown” makes it sound like something nice that goes on top of your tooth, but really, it’s like getting an entire new tooth glued to the pitiful stump of your old one.

also, my bite is off, due to my stress-induced jaw problems. he showed me exercises to do to help relax and realign my jaw, and made plans to make me a new nighttime mouthguard, now that i have gnawed the hell out of my old one to the point where it's riddled with holes.

before the appt, i braced myself for the Cancer Conversation i knew we'd be starting with, trying to plan brief responses to his inevitable questions, responses which would not invite further questions. and that seemed to work - he replied with, "my heart goes out to you. i don't know what more to say." i appreciated that, and thought, whew, cancer conversation out of the way. but about 90 mins later when i was in pain and swallowing blood and really just trying to take deep breaths until it was all over,

he actually pulled the earphones away from my head (i was listening to his alison krauss CD - very nice of him) to say something like, "you're going to be okay! you know that, don't you? you're doing so many good things, and you will be okay. if you were NOT doing all these good things, you wouldn't be okay." trying to continue focusing on alison krauss, i did the smile-and-nod thing, but when i heard "blah blah blah silver lining blah blah" come out of his mouth, lulu rushed to my side and started barking like crazy.

lulu's warning to the world at large: DO NOT use the words "silver lining" in reference to cancer, ever. this goes back to the "cancer is not a gift" thing.

by the way, i've been hearing stories from a few of you that lulu has been helping you out during doctor's appointments, too! i'm so glad! lulu can teleport anywhere, instantly, so feel free to borrow her whenever you need her!!

Friday, April 16, 2010

Zappin it to ya...

Update on everything:

1. I skipped radiation today, just for today, and DAMN did that feel good.

2. I've been experiencing depression and anxiety, which waxes and wanes, and is very stressful. I don't really want to blog about it... I'm just saying.

3. I went to trapeze class last night, and it felt SO SO good to be "back," with chalked-up hands, re-building my calluses... but my entire relationship with trapeze is so different now... that is a post of its own for another time, or maybe in my trapeze blog instead of here.

4. I went to an art show at Keene State College tonight, which included an exhibit by KSC senior Jessica Yager, whose mother was diagnosed with breast cancer last year. Her mother's journey, from diagnosis through treatment, is the theme of Jessica's art, and it's incredible. I was entranced by this fountain she created, with a life-sized bronze sculpture of her mother (post-mastectomy), standing in a healing rain, in a bed of ocean stones. It's beautiful. After I stared at this for a while, I rounded the corner and was suddenly inches from this large drawing of a breast filled with lobules and lymph nodes glowing blue... that brought me to tears, as the memories of my Sentinel Node biopsy came back to me. The blue dye they injected into my areola to make my lymph nodes glow like that, too.

Jessica's art is a mixture of drawings and words (found a lump, Oncotype, mammogram, mucinous tumor), sort of all blended together, and it was so emotional for me because it was like a huge, public, visual representation of the swirl of thoughts/words/emotions that are inside of me. Part of one drawing was her mother lying on the radiation table, there under the linear accelerator, and it was so surreal to be staring at that in an art gallery... that machine that has been a daily part of my life now for a month. I thanked Jessica for her work, rather stupidly saying by way of introduction, "I have breast cancer, too!" And then I met Jessica's mother, who immediately wrapped me in a hug. She asked me how things are going for me, and I blurted out, "I skipped radiation today!!" and it turns out she, too, is about 2/3 of the way through her radiation treatments. We were both a bit teary as we talked, connecting as is only possible with a woman who's been through the same journey as you have. I cannot recall any time pre-diagnosis when there was anything in my life that led me to hug and cry with a complete stranger the instant we met... it's a very strange feeling.

If you're near KSC, check out the gallery... Here's the info: http://www.keene.edu/tsag/exhibits.cfm

Tuesday, April 13, 2010

Planning Ahead

This is a crazy thing to be saying in April, but - I WANT TO RETURN TO SKIING! I skiied regularly from age 6 all the way through college. Then I stopped, because once my student discount was gone, I couldn't afford the lift tickets. But when I was packing/moving recently, I came across my little ski medal (bronze, junior race, Bretton Woods) and I started reminiscing about how much I really loved skiing. And I realized I miss it a lot. I HATE HATE HATE snow and winter, as many of you know, but I was thinking... back when I was a skiier, I didn't hate winter this much. Maybe I only hate winter/snow because I don't have an enjoyable winter activity anymore, and swooshing down the slopes again would improve my relationship with winter!


Sadly, my ski equipment is currently collecting dust in my parents' attic. One ski boot is full of mouse poop. But I will clean everything up for the next ski season!!

Thursday, April 8, 2010

"I'm Too Young for This"

This weekend, I'm going to a conference in Boston for young adult cancer survivors. Haven't been to Boston in years...really looking forward to it!

Actually, I was on the fence about going. It's 2.5 hours of travel each way... is it worth it? Is being with other young adults with cancer that important to me? Then, I had this interaction with another radiation patient yesterday... she's maybe in her early 70s. I said hi to her as she came out of the radiation room, and she said hi back, and I asked how many treatments she has left. Just a few, she told me, then grasped my arm and launched in with:

"You just started, didn't you? I'm so sorry, honey! You're so young! How old ARE you? 31? You don't look that old! Oh, you shouldn't be here! I'm so sorry. I'll pray for you. You're a good little girl!"

I went home and registered for the conference!!!!

Gonna B OK

Yesterday was much better, because:

A) It was 85 degrees and gorgeous. I walked to and from the hospital along a woodsy trail by the river, and parts of the trail even felt like Fest! The techs laughed at how sweaty my chest was from the sun & exercise.
B) I had 2 Rescue Remedy pastilles and 6 squares of 72% dark chocolate.
C) I remembered to stuff my pockets full of sweet notes from my loved ones, healing stones, little photos, etc. so I could carry all that love with me into the icky radiation room.
D) K reminded me (via email) of why exactly I had chosen to do radiation instead of mastectomy, and I had actually forgotten that (!!), so I thought about it the whole time I was in the waiting room, re-affirming my decision.
E) It felt great to have given up my need to understand & trust the radiation and to be able to just trust by proxy, and thus, I was able to lay there with my eyes closed and breathe and was more relaxed than usual on the table.

And LULU was awesome!! She is the radiation oncologist's social-guide dog that my imagination created, and I was looking forward to seeing her during my meeting with rad. onc. after my treatment... I was so surprised when LuLu showed up in the radiation room first!! She was sitting on the floor there next to the table, and looked up at me and winked, from behind those goofy glasses. "I'm ready!" she assured me, and her voice was surprisingly deep for a dog wearing a pink bow. I almost laughed out loud. Maybe I am really freakin losing my mind. :)

LuLu was very helpful during my meeting with rad onc. When he came into the room and stayed standing against the counter instead of sitting in one of the 2 available chairs, LuLu sat next to me instead. Rad onc said that he heard I'd been having a rough week. I told him I now have contact info for a few therapists and support groups, which is helpful, and he replied, "Have you called any of the therapists yet? Sometimes you don't click with someone right away and have to try a few to find someone who you click with. And as for support groups, well, sometimes hearing all about other people's problems just makes it more difficult, but, I guess you won't know until you try it..."


LULU TRANSLATES:
"I'm so glad to hear you've been reaching out for support! That can be difficult to do! A lot of women have found the support group very helpful; I hope it goes well for you and you connect with some wonderful people. I've heard great things about the therapists that [nurse] recommended to you. It's not uncommon for women who are going through daily radiation to struggle with it like this, especially mid-treatment, so you're not alone, Britta. There are many sources of support for you."

And when I expressed my skepticism of the necessity of the 33 radiation treatments (e.g. maybe I'd be fine with less!), rad onc admitted that I'm right, there's really no way to know if I actually needed ANY radiation, or less than the 33 treatments, or the full 33 treatments... then he started rambling about something that I only heard as: "test tubes of cancer cells extrapolation radiobiology cancer cell death lower curve randomized trials..." LuLu distracted me by licking my face, rolling her eyes sarcastically, and making goofy faces at me. She also apologized for his tie.

I walked about 90 minutes in the sunshine yesterday, which was so nice... and my theory was that exercise would prevent (or at least reduce) the fatigue that comes from radiation, but maybe not?? I started watching a DVD around 7:45 pm and fell asleep before it was even over, then slept straight through till 7 am!! (That's WITHOUT the 20mg of melatonin that I take nightly - because I fell asleep before I could take it!)

Tuesday, April 6, 2010

LuLu

I'm devising coping strategies for my various problems at radiation.

I've recently come to understand that I should not be taking the rad. onc.'s less-than-stellar bedside manner personally, and that it's more him than me. This helps. I wish he could have an assistant with him, to guide him in situations that require interacting with other humans, similar to the way in which people with visual impairments are assisted by seeing eye dogs.

So, I'm going to IMAGINE such an assistant every time I have to interact with him. Meet the rad. onc.'s guide dog, LuLu:



When I first met the rad. onc., his opening line to me was, "So...this all started with a lump?"

LULU TRANSLATES:

"Hi, I'm Dr. [name], it's nice to meet you! I've spoken with your surgeon, and I've reviewed your medical records, and I'd like to spend a few minutes talking with you to hear what the journey has been like for you so far. I understand it was your nurse practitioner who palpated a lump in your breast, leading to your breast cancer diagnosis?"

When I said that I was still trying to decide between mastectomy and radiation, and that I feel confident that I would be okay with mastectomy if it is better for my health, the rad. onc. replied, "You might feel differently in 10 years. Some women want to preserve nipple sensation."

LULU TRANSLATES:

"What a difficult decision to have to make! You have my sympathies, but of course I can't imagine what having to make such a decision feels like, since I'm male! I'm assuming you're talking extensively with K about what mastectomy would mean, and I can tell you about what radiation would be like. Do you want information about a local support group for women with breast cancer? It might help to talk with other women who have needed to make a decision about radiation vs. mastectomy."

LuLu also comes over to let me pat her, and assures me that just like on the radio when the offensive words are bleeped out, she will bark louder than the rad. onc.'s voice if he ever attempts to say the words "nipple sensation" to me ever again.

Trying

One day at a time, right? I think yesterday was my "rock bottom" for radiation. I entered the building crying, and even when one of the techs rushed up to assure me that I could keep my shirt on instead of the gown, I was STILL crying when I entered the treatment room. (Which surprised and dismayed the techs, I think - in a, we let you wear your own clothes...NOW what's wrong?? way.) I was crying to the point where my breath was coming out in shuddery gasps that made it very difficult for my body to be correctly positioned and still. I mostly held my breath through the 44 seconds of radiation and then was outright sobbing like a little kid. One of the techs and a nurse calmed me down as I babbled all about my radiation fears to them, giving me tissues, kind words, and mini back rubs. Of course they added the usual disclaimers about how the rad. onc. is the only one who can fully answer my questions, and offered to let me go talk to him. I didn't want to. But I felt mostly better when I left after talking with the nurse and tech, and that got me thinking: which am I seeking more, comfort or information? Because they come from different sources, during this phase of treatment. It seems like my need for comfort & emotional support is currently stronger than my need for information, because I've noticed that during the past few days, I have reached out to the people I'm most comfortable with, knowing that they're not the ones with the answers to my radiation questions, but am still resistant to meeting with the rad. onc. despite his wealth of knowledge. (I don't mean reaching out to the nurse and the tech, necessarily - I sobbed to them by default, because they were the ones present, not because they were the ones I'd run to for comfort.)

I also realized that there is probably nothing more the rad. onc. can say at this point that would make me understand and believe that the radiation is good for me. He has tried to explain it to me, and other people have tried to explain it to me, but I just flat out can't believe/trust it - I continue to feel that the radiation is BAD. So what I've decided is that I'm going to try and let go of my need to understand it, as difficult as that is for me... and instead, I am going to trust the people who I trust who believe that the radiation is good for me. I still don't trust radiation, but I'm going to trust the people I trust's trust in it. Does that make sense?? And I will read the Tao te Ching lots and lots and lots to help me through this whole giving up control thing.

I am meeting with the rad. onc. tomorrow (it's required once a week!), and with my med. onc. on Friday, and I'm going to call tomorrow and make an appointment with a therapist. I will be okay. I really just had to have that meltdown, which I'd been staving off for such a long time. I think I wasn't allowing myself to "let go" like that, because people are always telling me how "amazing" and "strong" and "positive" and "inspiring" I am, and all of that. I get so many compliments for "keeping [my] spirits up" and I think subconsciously, I started to feel like I had to maintain that... like no way can I possibly fall prey to depression and anxiety, not when I'm Britta, the crazy silly hula-hooping happy girl who trapezes her way through cancer, in her Wonder Woman t-shirt! But you know what, there is also a Britta who sometimes cries so hard she nearly hyperventilates, and I have to be okay with that. And there's nothing like having to go to the hospital and be a cancer patient every goddamn day to trigger that meltdown.

And I still cannot make any promises that I will complete every day of radiation. But I now feel more committed to at least TRYING to. One day at a time is all I can do.

Monday, April 5, 2010

Down with the Gown!

UPDATE: They changed their minds and they are letting me wear my own T-shirt instead of the gown! (Except on Wednesdays - Wednesdays, I have to wear the gown. But whatever, I'll take it!!)

I still cried a river today, but, one step at a time.

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.