I feel so weak. Like, everywhere.
15 treatments down. That means, 12 left. It sounds like some sort of victory, but it feels like ass.
Oh, and my ass is deteriorating. So is the rest of me.
Maybe it's the fatigue. But my muscles used for my career - the ones that allow me to play music, feel weak as shit. Again, is this me being tired, or is this the freaking radiation ruining my life more than I thought it would?
Can someone please fund a study? Would anyone profit from said study?
No? Ok, no study.
But I survived a 4 hour rehearsal. Barely. I don't know how I'll get through my 2 shows this week. Where's my freaking backing track? Oh, I have none. We're au natural. Usually, I'm totally down with that. Now? I don't know. I don't know what I'm wearing, which should be the least of my worries - except I have no free time. I mean, none. If I could have negative free time, that would be what I have. I don't even make sense anymore!
I'm more worried about my gig in Toronto at the end of treatment. If the shit gets bad on my muscles or my fatigue, I'm going to see about taking a break. I mean, I have to keep my reputation as a reliable musician rolling. I feel like it's bullshit through this whole ordeal, but... it's SHOWTIME!
Speaking of, the article is apparently coming out in February. And apparently hubby and I are being considered for the cover. I guess we *are* kinda cute. Meh. Or maybe nobody else is doing much right now in the music world, at least our little corner. I'm getting the shit burned out of me!
Tonight, I got home after a very long day and night, and I'm burnt. Put my La Mer on. I mean, my pit is raw. I felt it when I took off my coat as I walked in. It was a moment of "Oh Jesus, this feels like the really, really bad sunburn I once got, when I swore to never go in the sun again". Of course, I love the sun. And I rarely burn. La Mer, do your work. Please. I can't deal. Everything sucks right now.
Not true. I love my family. But everything else? Kind of sucks ass. Atrophy ass. Not to be confused with A trophy ass. That, I never had. I just feel like someone who has never moved in her life. Like I've been wheeled around like this. Oh, and, I kind of want one now that I know this inaction figure exists. Way better than any Barbie out there, don'tcha think? Plus, I wouldn't have the complex that I would with something as horrific as this!
Here I go. A glass of wine. Please, let me sleep a bit. I'm so tired, I feel like my body is levitating. This used to happen when I was very sick as a kid - I mean 150 degree fevers. Ok, maybe they weren't that high, but I used to rise up to the ceiling and stare into the lightbulb that was inches from my face. I swore it happened. Maybe I had magical powers and it did. I could use some magical powers about now, wasted in my youth... sigh...
Monday, January 28, 2013
Saturday, January 26, 2013
Gym Day!
Hubby and I went to the gym today. It was my first time since radiation started, I think. My brain is so foggy and my energy is totally MIA. But, we went. Lifted light weights. Did some zombie cardio. Glad we did, frustrated that I'm so exhausted 'round-the-clock, but I'm going to be mellow this weekend.
The area around my left elbow tends to feel funky. Is it my brain, or is it my lymph? Or is it from holding my instrument? Agh. I'm just keeping in tune with my body and visually observing. I do not need a huge-mongous arm, unless I'm totally juicing and competing in bodybuilder contests. It's never too late, and those women lose so much body fat that they probably don't have estrogen issues, and they all have implants because they're more on the dude side when they get that huge.
Maybe bodybuilding is the cancer cure!
Ooh! Looky! I learned how to insert a video! Even with radiation brain!
The area around my left elbow tends to feel funky. Is it my brain, or is it my lymph? Or is it from holding my instrument? Agh. I'm just keeping in tune with my body and visually observing. I do not need a huge-mongous arm, unless I'm totally juicing and competing in bodybuilder contests. It's never too late, and those women lose so much body fat that they probably don't have estrogen issues, and they all have implants because they're more on the dude side when they get that huge.
Maybe bodybuilding is the cancer cure!
Ooh! Looky! I learned how to insert a video! Even with radiation brain!
Thursday, January 24, 2013
"What I learned about Lymphedema"
Tonight was the lymphedema workshop. Brought the whole family so if my radiated brain got clogged up, I had 4 more ears to catch the info.
We actually learned a lot. I learned that the pizza place down the block had "5 star pizza", according to my daughter, who hungrily wolfed down a steamy slice that came fresh from the oven, 10 minutes before our lymph class.
20% of breast cancer patients get lymphedema. I'd like to think I'll be in the 80%, but then again, I don't seem to be that good at beating the odds these days. Still... I'm not obese and don't plan on becoming so. I had only 6 nodes stolen in surgery. I have lived a very active lifestyle. So, that's awesome.
The bad stuff? Well, the breast cancer, the mastectomy, the lymph nodes gone, and the radiation that is currently burning the shit out of my once real breast and my armpit. And, I was informed today that they turned UP the radiation zaps on my pit. That's the spot that has been burning bad. Oh, joy. How 'bout I slam my head with a hammer over and over? That way, when I stop to get on the "Radiation Bed of Death", my head will feel some relief and I won't mind the sizzling skin.
No needles or blood pressure on the left arm. Check.
The good stuff: she is a fan of exercise. She also thinks that bag issues are so 10 years ago. Yeah, I shouldn't lug around 1000 lbs. of whatever in my shoulder bags. But normal carrying? Ok. I'm still nervous, but it made me feel a little better. And my backpack carrying? It's comfortable for me and makes it much lighter. She said, great!
Other things to avoid: too much sodium (oops, last night was basically a dinner salt lick!), jacuzzi's and saunas (um, damn!), sunburns (tell my freaking radiologist!!), insect bites (which I'm highly allergic to!), manicures (I'm glad I am a DIY girl, but boy, I like pampering... sigh...), gardening without gloves (how dorky, but I love my little garden in the summer - might be time to just trash the rosebush?), and a few other goodies that I fogged out on, I'm sure.
Flying. I do it enough to be on the alert! I'll be packing my sleeve/gauntlet in my carry on, and if anything looks suspicious, or if my arm looks like those inflatable things for emergency landings, on it goes. And I can't take it off until touchdown. Otherwise my nodes might go looney tunes and blow up worse. Way too much to think about! I always drink tons of water on planes, but I need to really get water logged now. The good thing is that I'll have to get up to go to the bathroom a lot - another thing suggested (getting up and moving, not necessarily the pee part).
Am I less paranoid? Maybe 30%, which is pretty good.
Hey, is my arm getting puffy? It feels odd.
I've been having that feeling for a few days now. And I know how my mind works. Is it all imagination? It looks cool, like it's my arm. My veins are bugging out of my hands, my tell-tale wrinkles are smiling at me. My rings fit. But still, my mind races. I'm the girl who cried "Lymphedema!"
I need a good night's sleep. But I have work to do. Crap. Need to finally email the draft of an article. Down to the wire for sure, but it was tough to write. ESPECIALLY WITH MY STAY-PUFT ARM. Just kidding. I think.
We actually learned a lot. I learned that the pizza place down the block had "5 star pizza", according to my daughter, who hungrily wolfed down a steamy slice that came fresh from the oven, 10 minutes before our lymph class.
20% of breast cancer patients get lymphedema. I'd like to think I'll be in the 80%, but then again, I don't seem to be that good at beating the odds these days. Still... I'm not obese and don't plan on becoming so. I had only 6 nodes stolen in surgery. I have lived a very active lifestyle. So, that's awesome.
The bad stuff? Well, the breast cancer, the mastectomy, the lymph nodes gone, and the radiation that is currently burning the shit out of my once real breast and my armpit. And, I was informed today that they turned UP the radiation zaps on my pit. That's the spot that has been burning bad. Oh, joy. How 'bout I slam my head with a hammer over and over? That way, when I stop to get on the "Radiation Bed of Death", my head will feel some relief and I won't mind the sizzling skin.
No needles or blood pressure on the left arm. Check.
The good stuff: she is a fan of exercise. She also thinks that bag issues are so 10 years ago. Yeah, I shouldn't lug around 1000 lbs. of whatever in my shoulder bags. But normal carrying? Ok. I'm still nervous, but it made me feel a little better. And my backpack carrying? It's comfortable for me and makes it much lighter. She said, great!
Other things to avoid: too much sodium (oops, last night was basically a dinner salt lick!), jacuzzi's and saunas (um, damn!), sunburns (tell my freaking radiologist!!), insect bites (which I'm highly allergic to!), manicures (I'm glad I am a DIY girl, but boy, I like pampering... sigh...), gardening without gloves (how dorky, but I love my little garden in the summer - might be time to just trash the rosebush?), and a few other goodies that I fogged out on, I'm sure.
Flying. I do it enough to be on the alert! I'll be packing my sleeve/gauntlet in my carry on, and if anything looks suspicious, or if my arm looks like those inflatable things for emergency landings, on it goes. And I can't take it off until touchdown. Otherwise my nodes might go looney tunes and blow up worse. Way too much to think about! I always drink tons of water on planes, but I need to really get water logged now. The good thing is that I'll have to get up to go to the bathroom a lot - another thing suggested (getting up and moving, not necessarily the pee part).
Am I less paranoid? Maybe 30%, which is pretty good.
Hey, is my arm getting puffy? It feels odd.
I've been having that feeling for a few days now. And I know how my mind works. Is it all imagination? It looks cool, like it's my arm. My veins are bugging out of my hands, my tell-tale wrinkles are smiling at me. My rings fit. But still, my mind races. I'm the girl who cried "Lymphedema!"
I need a good night's sleep. But I have work to do. Crap. Need to finally email the draft of an article. Down to the wire for sure, but it was tough to write. ESPECIALLY WITH MY STAY-PUFT ARM. Just kidding. I think.
Tuesday, January 22, 2013
I got my first lymphedema sleeve and gauntlet! Should I be excited?
Am I supposed to have some sort of event? Like a baptism type thing? It arrived today, the plain black one (I wish it was the floral jammie, but perhaps it's good to start slow). Unceremoniously packaged in a plain looking box. I didn't even know what it was, due to my sometimes late night online shopping with a glass of wine or Schmailey's. I was hoping I had bought the Louis Vuitton bag, but alas, I had more sense than that.
Damn.
It's interesting to have a medical garment. Just typing it makes me feel all sorts of icky. But, there it is. I haven't tried it on. It's not like getting a sexy new dress that you had to special order, or say, a Louis Vuitton bag that you have to carry around the house to see just how you look holding a monogrammed satchel. It's a black sleeve and gauntlet. To keep your arm and hand compressed. So you don't puff up like a marshmallow if your lymph decides to get all stupid.
Yup. Sexy as heck.
On another note, I had a rehearsal tonight with brand spanking new folks. To me, they were not newborns. New to me. Clarification is the key! Damn, it was nice. I like walking into situations where folks don't know I'm a Cancer Patient (lots of reverb, maniacal laughter and hand rubbing). I'm just a chick musician, I'm having fun. I have good ears. I have a stupid sense of humor that they seemed to handle well. I liked being a person, not cancer cells.
Back at the ranch... I wonder if anyone has studied alcoholism that develops after cancer. I'm not saying I am one - in fact, I have a super low tolerance. But damn, I take my super low tolerance nightly at this point. My brain races, and I need to step on the brakes at some point. Tonight, I almost reached for the white wine, but ended up pouring a Schmailey's (readers of previous posts may recall that my pet name for Carolan's is a play on the brand name Bailey's.) I wanted a drink and dessert. The half cup of homemade yogurt with blackberries followed by an orange clearly did not sate my need for sweets. That's when the Schmailey's comes in handy. It's dessert and drunkenness in one! How convenient!
I guess it could be worse. I could be shooting up. (The thought of voluntarily putting a needle in my body makes me want to vomit massive amounts of anything and everything that is in my body at the moment - and that is some quality Schmailey's in there right now!) No, I think my recreational calmer-downer is quite fine. I guess if I work my way up to a full glass of wine in an evening, I should worry. ;)
Big day tomorrow. Well, the usual - radiation fun! Who needs healthy skin??? And who doesn't want to be radioactive? But after that, my acupuncturist and I have a date! I need the freaking needles in my arm, my legs, my face. Calm me down - puncture the anxiety and the worry and the eating as a coping mechanism away. Though, she had an interesting take on my eating during stress.
My body needs it for some reason. Comfort? Sure. I guess it's better than sucking my thumb or walking around trying to rock myself like a baby. I could get a pacifier. I could find a small kitten to carry around all day. I could drag a teddy bear with me, or claim a "blankie" to carry like Linus. Seems like a lot of work. Easier to make some organic popcorn at home, freshly grind sea salt and pepper, savor the organic coconut oil that it was lovingly cooked in, freeing it's fluffy white goodness, with a few old maids left for crunchy fun at the bottom of the bowl. Oh, did I mention that it goes great with Schmailey's?
Back to tomorrow - I really would love to hit the gym. I don't think I've gone since radiation started. I'm in week 3. I'm a fat-ass. No, I'm not really, but I feel like one.
This morning, I felt drunk after radiation. I mean, I was staggering while walking. This happened on the first day as well, but it was less fun. Maybe it was the 3 day weekend that made my body "restart"? Anyway, it was fascinating, feeling like that before 9am. I would not be a good alcoholic, after all. It was interesting, and sort of fun, but I certainly would have felt gross if it were drink-induced rather than radiation-induced. Wait, why is it ok to feel like crap via radiation?
I guess because it's supposed to cure me. Or something.
Let me leave you with the following article. Sounds way more humane than all the shit I've been dealt! Bring on the rice!!! Maybe I can concoct a new crunchy snack food using rice... I mean, it couldn't hurt... sprinkled with broccoli sprouts (which are sprouting swimmingly, thank you!)
ps. 16 treatments left!
Damn.
It's interesting to have a medical garment. Just typing it makes me feel all sorts of icky. But, there it is. I haven't tried it on. It's not like getting a sexy new dress that you had to special order, or say, a Louis Vuitton bag that you have to carry around the house to see just how you look holding a monogrammed satchel. It's a black sleeve and gauntlet. To keep your arm and hand compressed. So you don't puff up like a marshmallow if your lymph decides to get all stupid.
Yup. Sexy as heck.
On another note, I had a rehearsal tonight with brand spanking new folks. To me, they were not newborns. New to me. Clarification is the key! Damn, it was nice. I like walking into situations where folks don't know I'm a Cancer Patient (lots of reverb, maniacal laughter and hand rubbing). I'm just a chick musician, I'm having fun. I have good ears. I have a stupid sense of humor that they seemed to handle well. I liked being a person, not cancer cells.
Back at the ranch... I wonder if anyone has studied alcoholism that develops after cancer. I'm not saying I am one - in fact, I have a super low tolerance. But damn, I take my super low tolerance nightly at this point. My brain races, and I need to step on the brakes at some point. Tonight, I almost reached for the white wine, but ended up pouring a Schmailey's (readers of previous posts may recall that my pet name for Carolan's is a play on the brand name Bailey's.) I wanted a drink and dessert. The half cup of homemade yogurt with blackberries followed by an orange clearly did not sate my need for sweets. That's when the Schmailey's comes in handy. It's dessert and drunkenness in one! How convenient!
I guess it could be worse. I could be shooting up. (The thought of voluntarily putting a needle in my body makes me want to vomit massive amounts of anything and everything that is in my body at the moment - and that is some quality Schmailey's in there right now!) No, I think my recreational calmer-downer is quite fine. I guess if I work my way up to a full glass of wine in an evening, I should worry. ;)
Big day tomorrow. Well, the usual - radiation fun! Who needs healthy skin??? And who doesn't want to be radioactive? But after that, my acupuncturist and I have a date! I need the freaking needles in my arm, my legs, my face. Calm me down - puncture the anxiety and the worry and the eating as a coping mechanism away. Though, she had an interesting take on my eating during stress.
My body needs it for some reason. Comfort? Sure. I guess it's better than sucking my thumb or walking around trying to rock myself like a baby. I could get a pacifier. I could find a small kitten to carry around all day. I could drag a teddy bear with me, or claim a "blankie" to carry like Linus. Seems like a lot of work. Easier to make some organic popcorn at home, freshly grind sea salt and pepper, savor the organic coconut oil that it was lovingly cooked in, freeing it's fluffy white goodness, with a few old maids left for crunchy fun at the bottom of the bowl. Oh, did I mention that it goes great with Schmailey's?
Back to tomorrow - I really would love to hit the gym. I don't think I've gone since radiation started. I'm in week 3. I'm a fat-ass. No, I'm not really, but I feel like one.
This morning, I felt drunk after radiation. I mean, I was staggering while walking. This happened on the first day as well, but it was less fun. Maybe it was the 3 day weekend that made my body "restart"? Anyway, it was fascinating, feeling like that before 9am. I would not be a good alcoholic, after all. It was interesting, and sort of fun, but I certainly would have felt gross if it were drink-induced rather than radiation-induced. Wait, why is it ok to feel like crap via radiation?
I guess because it's supposed to cure me. Or something.
Let me leave you with the following article. Sounds way more humane than all the shit I've been dealt! Bring on the rice!!! Maybe I can concoct a new crunchy snack food using rice... I mean, it couldn't hurt... sprinkled with broccoli sprouts (which are sprouting swimmingly, thank you!)
ps. 16 treatments left!
Saturday, January 19, 2013
Lymphedema sleeve and gauntlet. Sounds like a shady night club...
My energy has picked up slightly for some reason. Maybe it's my hormonal insanity.
But I've been getting really burnt. Like, bright red. The La Mer is the only thing fixing it. In fact, a few hours after I apply, it disappears. I need to save my skin, so it's worth the price tag. My reconstruction depends on the health of my skin, right? Well, and it depends on my surgeon. But I have so much control over the materials I'm going to hand to him. Or at least shove in his face and say, "FIX ME!!!"
I ordered some colloidal silver ointment too. And calendula ointment. I really love the word "ointment", but I ordered the calendula because I don't love the spray I currently have. It's light, but almost too light. It also smells icky. The silver? I was told about a serious burn cream that has colloidal silver in it, mentioned to the doc, and he said I don't need that until I peel or worse. I mentioned that I had ordered an over the counter natural thing, and he said fine. I think my doc knows I'm obsessed with healthy things (which is why this whole cancer shit makes NO sense!) and so far my remedies have been good choices. Hopefully that junk will arrive early next week. And the Cancer Center (maniacal laughter here) will be closed on Monday, so I get a day off from the lasers. It's bittersweet, I'd prefer to get another treatment out of the way. Damn. But my skin will have an extra day to literally chill. UPDATE: I used them both, and they are better than the calendula spray, but come nowhere near the La Mer. I have a good arsenal of skin fixers now, though!!!
Thursday morning after my time in the Holocaust Spa (thanks to my friend I.B. for that one!) I hopped the commuter nightmare (the subway at rush hour!) to hit the upper east side. ONE place in NYC accepts my supposedly rocking insurance to cover a lymphedema sleeve. Why is this? Well, I don't care anymore, because at Falk Surgical Supplies, Jeannette is a rock star. She measured my puny little arm for a sleeve and a gauntlet. Sounds sexy, right?
It's not.
The one I tried on was beige and gross. It was new and clean, don't get me wrong. But so medical looking. Like I'm trying to hide the fact that I'm wearing a surgical garment. Nasty.
So I asked if she had something more interesting. I could get black. Good. Now we're getting somewhere. I then explained what I do for a living, and she loves the instrument I play - not something I hear every day. She said they could dye a sleeve in purple, my favorite color. Then she pulled out a catalog from Lymphedivas! Remember that I had picked out a pretty sleeve a few days ago? It's on order. So is a black one (of the icky surgical variety, but hey. It's stage appropriate, right?) And I only have to use them sometimes on flights or if I'm on stage a long ass time with my arm in the air (like I just don't care! Even if I do!)
Hopefully all will go smoothly and I will have my surgical medical duds soon, before my next flight in 3 weeks. It's a shortie, but I fly in the morning, hit the stage for soundcheck and concert, and fly out again the next morning. That's a lot of pressure. I mean, air pressure, and holding my arm up for long periods of time pressure.
I'm glad I'm vain. I love my Creme De La Mer, and I am so glad I spend the money on caring for my skin. Otherwise I'd never realize that it could save my skin through this horrible ordeal. I don't know if it will prevent anything awful in the next 4 weeks, most likely I will be a disaster in the end like everyone else, but it was SO burnt already that it would be like getting sunburned on day one of vacation in some super duper sunny, tropical joint, and continuing to go out in the sun all day without sunscreen or a cover up, and continuing to burn for a month-long vacation. You'd be in the hospital, right? Probably before a week was up. I wish I could put sunscreen on before getting in the Nuclear Zap-o-Matic, but of course, I can't. So, I'm glad I bought a new jar of La Mer recently.
And I'm glad I like my radiologist. He's funny as hell. And totally honest. And gets that I'm a little nuts and very concerned about the effects of all this shit. And I think he's glad that I'm getting the crap burned out of me, despite my whining about becoming the hulk, or glowing, or whatever... I want to live. Not forever. But enough to feel like I didn't miss my life. My mom died at 50, right after her birthday. I talk about her all the time and wish she was here. Tonight, it was about how she made pizza from scratch. She'd toss the dough into the air like a freaking Italian. She did all this stuff like it was no big deal. I guess that's where I get my D.I.Y. vibe.
And now, it's Saturday. I forgot to post that so I changed some tenses.
I've started worrying about bags. Not under my eyes, I'm hoping those will go away when things start getting back to what my new normal will be, after radiation and final surgery. But, handbags. I bought a super cute Coach Backpack before surgery, knowing that it would be a challenge to carry a handbag. It was rough going over the left shoulder for a month or so, but now? It's my "go-to" bag. Carries a lot but doesn't feel heavy. When I decide to not look like a schoolgirl, I try to carry a very small purse, but that doesn't always work. It's REALLY tough carrying a "regular" purse, especially since I always carried them on my left side. I walk like there is something severely wrong, my gait looks like I may have sprained my ankle or am incredibly drunk. It hurts my back like crazy. So now, the question - do I get another designer backpack? One that is perhaps black and dressy? Has it come to this???
My instrument is usually carried in a case with backpack straps. Unless it's being wheeled with others. So on gigs, I have to deal with a shoulder bag. Awkward. But seriously, other than the occasions when I can go out with a wallet and a compact with a small lipstick, how do I deal with the shoulder bag issue? I live in NYC, so I walk pretty much everywhere, or take the subway. I don't drive. I can't toss my bag in the car. I'm stuck carrying whatever I've got. And no, I'm not going to move.
I was considering a black Gucci or Prada bag. Then I remembered that I have to pay the bills and stuff. I know I can score a gently abused one on eBay... but any other ideas out there? How can I keep my chic-ness with a backpack? I love the Coach, and am so happy I got it, but I need something else too. I have a small black Kipling (sans monkey) that I never use, but I need something bigger, and also something fancier. This whole breast cancer thing really is a damper on my bag collection. And no, I won't have a backpack every day for the rest of my life, but I do think that my daily everyday bags should be so.
Anyway, I need to sleep. My inner alarm clock goes off at 6:45 daily. Where is the damn weekend trigger? Maybe in this glass of wine...
But I've been getting really burnt. Like, bright red. The La Mer is the only thing fixing it. In fact, a few hours after I apply, it disappears. I need to save my skin, so it's worth the price tag. My reconstruction depends on the health of my skin, right? Well, and it depends on my surgeon. But I have so much control over the materials I'm going to hand to him. Or at least shove in his face and say, "FIX ME!!!"
I ordered some colloidal silver ointment too. And calendula ointment. I really love the word "ointment", but I ordered the calendula because I don't love the spray I currently have. It's light, but almost too light. It also smells icky. The silver? I was told about a serious burn cream that has colloidal silver in it, mentioned to the doc, and he said I don't need that until I peel or worse. I mentioned that I had ordered an over the counter natural thing, and he said fine. I think my doc knows I'm obsessed with healthy things (which is why this whole cancer shit makes NO sense!) and so far my remedies have been good choices. Hopefully that junk will arrive early next week. And the Cancer Center (maniacal laughter here) will be closed on Monday, so I get a day off from the lasers. It's bittersweet, I'd prefer to get another treatment out of the way. Damn. But my skin will have an extra day to literally chill. UPDATE: I used them both, and they are better than the calendula spray, but come nowhere near the La Mer. I have a good arsenal of skin fixers now, though!!!
Thursday morning after my time in the Holocaust Spa (thanks to my friend I.B. for that one!) I hopped the commuter nightmare (the subway at rush hour!) to hit the upper east side. ONE place in NYC accepts my supposedly rocking insurance to cover a lymphedema sleeve. Why is this? Well, I don't care anymore, because at Falk Surgical Supplies, Jeannette is a rock star. She measured my puny little arm for a sleeve and a gauntlet. Sounds sexy, right?
It's not.
The one I tried on was beige and gross. It was new and clean, don't get me wrong. But so medical looking. Like I'm trying to hide the fact that I'm wearing a surgical garment. Nasty.
So I asked if she had something more interesting. I could get black. Good. Now we're getting somewhere. I then explained what I do for a living, and she loves the instrument I play - not something I hear every day. She said they could dye a sleeve in purple, my favorite color. Then she pulled out a catalog from Lymphedivas! Remember that I had picked out a pretty sleeve a few days ago? It's on order. So is a black one (of the icky surgical variety, but hey. It's stage appropriate, right?) And I only have to use them sometimes on flights or if I'm on stage a long ass time with my arm in the air (like I just don't care! Even if I do!)
Hopefully all will go smoothly and I will have my surgical medical duds soon, before my next flight in 3 weeks. It's a shortie, but I fly in the morning, hit the stage for soundcheck and concert, and fly out again the next morning. That's a lot of pressure. I mean, air pressure, and holding my arm up for long periods of time pressure.
I'm glad I'm vain. I love my Creme De La Mer, and I am so glad I spend the money on caring for my skin. Otherwise I'd never realize that it could save my skin through this horrible ordeal. I don't know if it will prevent anything awful in the next 4 weeks, most likely I will be a disaster in the end like everyone else, but it was SO burnt already that it would be like getting sunburned on day one of vacation in some super duper sunny, tropical joint, and continuing to go out in the sun all day without sunscreen or a cover up, and continuing to burn for a month-long vacation. You'd be in the hospital, right? Probably before a week was up. I wish I could put sunscreen on before getting in the Nuclear Zap-o-Matic, but of course, I can't. So, I'm glad I bought a new jar of La Mer recently.
And I'm glad I like my radiologist. He's funny as hell. And totally honest. And gets that I'm a little nuts and very concerned about the effects of all this shit. And I think he's glad that I'm getting the crap burned out of me, despite my whining about becoming the hulk, or glowing, or whatever... I want to live. Not forever. But enough to feel like I didn't miss my life. My mom died at 50, right after her birthday. I talk about her all the time and wish she was here. Tonight, it was about how she made pizza from scratch. She'd toss the dough into the air like a freaking Italian. She did all this stuff like it was no big deal. I guess that's where I get my D.I.Y. vibe.
And now, it's Saturday. I forgot to post that so I changed some tenses.
I've started worrying about bags. Not under my eyes, I'm hoping those will go away when things start getting back to what my new normal will be, after radiation and final surgery. But, handbags. I bought a super cute Coach Backpack before surgery, knowing that it would be a challenge to carry a handbag. It was rough going over the left shoulder for a month or so, but now? It's my "go-to" bag. Carries a lot but doesn't feel heavy. When I decide to not look like a schoolgirl, I try to carry a very small purse, but that doesn't always work. It's REALLY tough carrying a "regular" purse, especially since I always carried them on my left side. I walk like there is something severely wrong, my gait looks like I may have sprained my ankle or am incredibly drunk. It hurts my back like crazy. So now, the question - do I get another designer backpack? One that is perhaps black and dressy? Has it come to this???
My instrument is usually carried in a case with backpack straps. Unless it's being wheeled with others. So on gigs, I have to deal with a shoulder bag. Awkward. But seriously, other than the occasions when I can go out with a wallet and a compact with a small lipstick, how do I deal with the shoulder bag issue? I live in NYC, so I walk pretty much everywhere, or take the subway. I don't drive. I can't toss my bag in the car. I'm stuck carrying whatever I've got. And no, I'm not going to move.
I was considering a black Gucci or Prada bag. Then I remembered that I have to pay the bills and stuff. I know I can score a gently abused one on eBay... but any other ideas out there? How can I keep my chic-ness with a backpack? I love the Coach, and am so happy I got it, but I need something else too. I have a small black Kipling (sans monkey) that I never use, but I need something bigger, and also something fancier. This whole breast cancer thing really is a damper on my bag collection. And no, I won't have a backpack every day for the rest of my life, but I do think that my daily everyday bags should be so.
Anyway, I need to sleep. My inner alarm clock goes off at 6:45 daily. Where is the damn weekend trigger? Maybe in this glass of wine...
Tuesday, January 15, 2013
Egads. Is it only Tuesday?
That means 3 more radiation zaps this week. Owie.
Been feeling some twinges from time to time. Also feeling less range of motion. A little discoloration but the $150/oz. Creme De La Mer takes care of that. I also use organic aloe vera gel and calendula spray. The gel is sticky and freaks me out unless I can go "au natural". The spray is super dry but I don't love the smell. I may have to look for a calendula cream, which is a good thing to have regardless.
The good news is that my appetite is better. The bad news? It's better. I did manage to drop a few lbs., but we'll see if I can keep them off. I'm ok at this weight, it's just a few over my ideal. But it's going to be really tough, unless that blessed nausea returns. Especially when I'm so damned hormonal. Men have NO CLUE what we go through with that crap. We could consume millions of calories at the right time of the month. Or wrong time - I should say. Thank goodness for rice cereal and almond milk. Tomorrow I may not be so happy with the scale. It's remarkable, I read so much about cancer affecting body weight. Many times it's medication related, but just as often it's emotional. Being diagnosed with cancer is like a life sentence of PMS.
My husband definitely couldn't have known that he was about to marry a 24/7/365 PMS case. Eating, moody, depressed. I think the docs should prescribe spouses with a good anti-depressant as a default.
Poor guy. I'm trying to be Me, but I feel like my diagnosis scared Me away, and I'm left with all the other crap. And anytime Me tries to sneak back in, there is a reminder. Fatigue, pain, a frozen boob, nausea, ravenosity (damn, that's a fine made-up word!)...
The good news, I only have 20 more radiation torture sessions left. The bad news? 20 more. But I'm hoping we stick to the original plan, which I realized was 27 and not 30. It seems like 3 more sessions would be no biggie, unless you've been through this living hell.
I'm really hoping that the skin stays intact. It actually looks good right now, being only 7 sessions in, and using the goop and potions and jars worth some countries salary. I also have gifted skin, but it still burns. I'm really nervous about show clothes coming up. I sweat like a fat dude on stage, and I never wear sleeves and rarely do I wear straps at all. Even a straight across tube type of dress or a tank top style will most likely show the damaged goods. I am not about to wear a turtleneck on stage!
I had asked the technician the other day how far I should be putting the lotion on, and he said approximately from the middle of my chest, halfway down to my navel and pretty much up to my clavicle, and also under the arm through that section. Um. So, pretty much, I should bathe in lotion. Should I put it in the basket, Precious???
Of course, that was a bigger area than they're treating, but until I can see the lines, better goopy than sorry. Blech. And no, the freaking CDLM is NOT going over that entire thing. I am NOT J. Lo (who reportedly uses La Mer all over her body. Seems her insured booty would take up more than my entire body! If only I had that kind of bread, I'd STILL conserve on the La Mer!)
Back to drama at the day gig. Utter Bullshit.
Everyone is mad that knows about it. I'm working through lunch and staying as late as I can stay awake. It's dumb. Productivity pretty much sucks ass when you don't take a break in the middle of the day, and you stay late just for the sake of clocking in hours. But I also have to go get fitted for a lymphedema sleeve and gauntlet (sounds sexier than it is) probably this week. I found exactly ONE place that will work with my supposedly good insurance for this item. Of course, before I finally found them, I was starting to prepare to buy one on my own and found THIS! Of course, insurance is covering the bland ones. Hubby said if I really wanted this I could get it as well, but it's really only for flying and perhaps long rehearsals etc. So, no thanks. I'll keep my $145. But maybe I can find a cool cover, or bedazzle it on my own! Yes, I have a bedazzler and I know how to use it, thanks to a good friend who took my bedazzling threats seriously. SHINY THINGS!!!
My supervisor has been called very nasty names by my doctors. Such names as: "F*cking *ss Hole*" and my personal shocker favorite: "G*d D*mned C*nt". Yes. They were said by medical professionals. Because they're true. But there's my quandary. 4.60 more weeks of this crap. It's hard to not spew nasty shit at her, but the truth is that I need the insurance desperately. The funny thing is that I think she likes me. I'm sure she treats most people in her life this way. Must be easy to have none friends. Well, as the office manager told me when asking how I felt, "What comes around, goes around". Now, I'm not saying I want my supervisors soon-to-be-born baby to have some awful illness, but I believe it - shit comes back to you. I've had it happen. I've seen it happen. So I just have to sit back and let Karma be my BFF.
Damn, I'm tired. But my broccoli sprouts are gorgeous, my new yogurt batch is made, and I still need to move on the next kombucha batch. I just remembered that I used to refer to it as "mushroom pee" years ago. If I had the energy, I'd laugh.
Eyelids. So heavy. Must stay awake until little girl goes to bed. How pathetic I've become with 7 radiation treatments. Tell me this isn't my fate. Tell me I will again wake up someday. I want Me back.
Been feeling some twinges from time to time. Also feeling less range of motion. A little discoloration but the $150/oz. Creme De La Mer takes care of that. I also use organic aloe vera gel and calendula spray. The gel is sticky and freaks me out unless I can go "au natural". The spray is super dry but I don't love the smell. I may have to look for a calendula cream, which is a good thing to have regardless.
The good news is that my appetite is better. The bad news? It's better. I did manage to drop a few lbs., but we'll see if I can keep them off. I'm ok at this weight, it's just a few over my ideal. But it's going to be really tough, unless that blessed nausea returns. Especially when I'm so damned hormonal. Men have NO CLUE what we go through with that crap. We could consume millions of calories at the right time of the month. Or wrong time - I should say. Thank goodness for rice cereal and almond milk. Tomorrow I may not be so happy with the scale. It's remarkable, I read so much about cancer affecting body weight. Many times it's medication related, but just as often it's emotional. Being diagnosed with cancer is like a life sentence of PMS.
My husband definitely couldn't have known that he was about to marry a 24/7/365 PMS case. Eating, moody, depressed. I think the docs should prescribe spouses with a good anti-depressant as a default.
Poor guy. I'm trying to be Me, but I feel like my diagnosis scared Me away, and I'm left with all the other crap. And anytime Me tries to sneak back in, there is a reminder. Fatigue, pain, a frozen boob, nausea, ravenosity (damn, that's a fine made-up word!)...
The good news, I only have 20 more radiation torture sessions left. The bad news? 20 more. But I'm hoping we stick to the original plan, which I realized was 27 and not 30. It seems like 3 more sessions would be no biggie, unless you've been through this living hell.
I'm really hoping that the skin stays intact. It actually looks good right now, being only 7 sessions in, and using the goop and potions and jars worth some countries salary. I also have gifted skin, but it still burns. I'm really nervous about show clothes coming up. I sweat like a fat dude on stage, and I never wear sleeves and rarely do I wear straps at all. Even a straight across tube type of dress or a tank top style will most likely show the damaged goods. I am not about to wear a turtleneck on stage!
I had asked the technician the other day how far I should be putting the lotion on, and he said approximately from the middle of my chest, halfway down to my navel and pretty much up to my clavicle, and also under the arm through that section. Um. So, pretty much, I should bathe in lotion. Should I put it in the basket, Precious???
Of course, that was a bigger area than they're treating, but until I can see the lines, better goopy than sorry. Blech. And no, the freaking CDLM is NOT going over that entire thing. I am NOT J. Lo (who reportedly uses La Mer all over her body. Seems her insured booty would take up more than my entire body! If only I had that kind of bread, I'd STILL conserve on the La Mer!)
Back to drama at the day gig. Utter Bullshit.
Everyone is mad that knows about it. I'm working through lunch and staying as late as I can stay awake. It's dumb. Productivity pretty much sucks ass when you don't take a break in the middle of the day, and you stay late just for the sake of clocking in hours. But I also have to go get fitted for a lymphedema sleeve and gauntlet (sounds sexier than it is) probably this week. I found exactly ONE place that will work with my supposedly good insurance for this item. Of course, before I finally found them, I was starting to prepare to buy one on my own and found THIS! Of course, insurance is covering the bland ones. Hubby said if I really wanted this I could get it as well, but it's really only for flying and perhaps long rehearsals etc. So, no thanks. I'll keep my $145. But maybe I can find a cool cover, or bedazzle it on my own! Yes, I have a bedazzler and I know how to use it, thanks to a good friend who took my bedazzling threats seriously. SHINY THINGS!!!
My supervisor has been called very nasty names by my doctors. Such names as: "F*cking *ss Hole*" and my personal shocker favorite: "G*d D*mned C*nt". Yes. They were said by medical professionals. Because they're true. But there's my quandary. 4.60 more weeks of this crap. It's hard to not spew nasty shit at her, but the truth is that I need the insurance desperately. The funny thing is that I think she likes me. I'm sure she treats most people in her life this way. Must be easy to have none friends. Well, as the office manager told me when asking how I felt, "What comes around, goes around". Now, I'm not saying I want my supervisors soon-to-be-born baby to have some awful illness, but I believe it - shit comes back to you. I've had it happen. I've seen it happen. So I just have to sit back and let Karma be my BFF.
Damn, I'm tired. But my broccoli sprouts are gorgeous, my new yogurt batch is made, and I still need to move on the next kombucha batch. I just remembered that I used to refer to it as "mushroom pee" years ago. If I had the energy, I'd laugh.
Eyelids. So heavy. Must stay awake until little girl goes to bed. How pathetic I've become with 7 radiation treatments. Tell me this isn't my fate. Tell me I will again wake up someday. I want Me back.
Sunday, January 13, 2013
Whirlwind day. And now, a breath and a cup of coffee. Oh, and a crash and burn.
Yesterday. Wow. Had a rehearsal for the dance piece, and it was so interesting to play for this piece again. When we did the first run, I knew I had breast cancer. I watched 4 female dancers in various stages of undress, mostly un. This rehearsal was a bit surreal, watching these women move around with nothing to hide. I wondered how a piece like this would be if the woman/women had reconstructive surgery of varying degrees. Perhaps one character without reconstruction. One with expanders only. One with a full on reconstruction but nipple-less. And one with complete reconstruction. I don't know about you - but I would go see this in a heart beat. Hey - if anyone does this piece, I want credit AND a spot in the band! Just leave me off the dance floor. At least, I think.
Hubby and I met back home for about 30 minutes before he left for his gig, and we had some soup - we're both on the edge of a cold and have been hanging here for a while now. I'm pretty sure I have to be extra careful during this time. My immune system feels like a stun gun popped it. Hopefully, it will wear off and I'll be back in business, but I'm so tired and underslept and overworked that I feel like every germ that might be lurking can find it's way to my system.
Anyway, I played the dance piece, had to run out because we started late to get to my other gig - but it all worked out. Had a blast at the second gig, ran into quite a few folks that I hadn't seen in a while, one singer I saw, I probably last saw about 15 years ago. Is that even possible? Anyway, had a great time playing with the boys and seeing friends. Got home a few minutes before the hubby, and we made some post-gig popcorn and tried to relax.
And here I am. Sunday morning. Exhausted. The kitties make a racket when it starts getting late and nobody's fed them. I get it, but sheesh! Got up for coffee and a protein shake (I got this new super duper live enzyme sprouted everything shake but am too lazy to get up and look at the package to link it. But it is cancer safe and not vile tasting). I then started thinking about having "a day" and immediately, my body shut down. I'm so tired. Hubby made me go lay down, and he rubbed my feet and tried to convince me to sleep, but my brain! Stupid brain! Or is it the opposite? No matter. I did lay down for a bit, but am back up (obviously). Fixed a spinach salad with cottage cheese and flaxseed oil, and mixed in some homemade pesto (organic basil from our garden, garlic - lots, and chopped walnuts, the cancer killer!) Glad we had it in the freezer! At the end of the summer I went out and chopped it all down and made a huge batch of oil-less pesto so we could season and use it for whatever. That whatever was yummy and healthy.
I'm not sure if I posted about my broccoli sprouter yet - but I started a batch Friday evening, been rinsing twice a day, and they are little sprouty guys now! I forget how many days it takes for them to be super rock star sprouts, but I'm pretty sure in a couple of days we'll be starting a new batch. I'm also happy that I started a yogurt batch last night. I need to check out my kombucha to see if I need to make more of that. Funny how all of these processes become second nature. Next on the list is sauerkraut and/or kimchee. And no, I'm not sewing our own clothes yet. Or probably ever.
Looking forward to seeing my little girl tonight. She spent the weekend with her dad (most likely her grandparents, then), and she has rehearsal for her play this afternoon. Yes, on a Sunday. I sure hope her dad doesn't drop the ball - I have reminded him several times, and it will give him a chance to drop her off and not be responsible for her. I just hope he really does it, for her sake. Of course, the little voice in my head says to remind him again today. Since when did I sign up to babysit my 50 year old ex?
On the burned aquarium in my chest. It's red. The Creme De La Mer is very helpful, and expensive but I can use it at night and make sure that it all gets absorbed into my skin and not clothing. It's really amazing how it takes the redness down a few notches. With the new ass-hole time crunch at work, I need to figure out a way to apply at least some organic aloe vera gel and run to work right after treatment without drying time. My girl and I just cleaned out some tee shirts that are too small on her, so I think I'll chop them up and make little cotton covers to keep the crud from seeping into my bra/shirt. But I am trying to think of a plastic barrier to put between the cotton and bra, so I can hopefully prevent staining of clothing. Imagine if all of my shirts develop stains over the left breast? Yikes. Saran wrap is too pliable and annoying. Any ideas? How is my skin going to hold up for 5 more weeks of this shit? I read so much about the skin basically dying. I started to google pictures but had to stop. If my skin gets anywhere near that, I'm going to request a FUCKING BREAK. Oh my GOD, PEOPLE! You can't walk around with your cancer breast looking like a bag of rotten meat and think that it's helping you.
Wow. Anyway, yes. I will be taking care of my skin as best I can.
Hubby and I met back home for about 30 minutes before he left for his gig, and we had some soup - we're both on the edge of a cold and have been hanging here for a while now. I'm pretty sure I have to be extra careful during this time. My immune system feels like a stun gun popped it. Hopefully, it will wear off and I'll be back in business, but I'm so tired and underslept and overworked that I feel like every germ that might be lurking can find it's way to my system.
Anyway, I played the dance piece, had to run out because we started late to get to my other gig - but it all worked out. Had a blast at the second gig, ran into quite a few folks that I hadn't seen in a while, one singer I saw, I probably last saw about 15 years ago. Is that even possible? Anyway, had a great time playing with the boys and seeing friends. Got home a few minutes before the hubby, and we made some post-gig popcorn and tried to relax.
And here I am. Sunday morning. Exhausted. The kitties make a racket when it starts getting late and nobody's fed them. I get it, but sheesh! Got up for coffee and a protein shake (I got this new super duper live enzyme sprouted everything shake but am too lazy to get up and look at the package to link it. But it is cancer safe and not vile tasting). I then started thinking about having "a day" and immediately, my body shut down. I'm so tired. Hubby made me go lay down, and he rubbed my feet and tried to convince me to sleep, but my brain! Stupid brain! Or is it the opposite? No matter. I did lay down for a bit, but am back up (obviously). Fixed a spinach salad with cottage cheese and flaxseed oil, and mixed in some homemade pesto (organic basil from our garden, garlic - lots, and chopped walnuts, the cancer killer!) Glad we had it in the freezer! At the end of the summer I went out and chopped it all down and made a huge batch of oil-less pesto so we could season and use it for whatever. That whatever was yummy and healthy.
I'm not sure if I posted about my broccoli sprouter yet - but I started a batch Friday evening, been rinsing twice a day, and they are little sprouty guys now! I forget how many days it takes for them to be super rock star sprouts, but I'm pretty sure in a couple of days we'll be starting a new batch. I'm also happy that I started a yogurt batch last night. I need to check out my kombucha to see if I need to make more of that. Funny how all of these processes become second nature. Next on the list is sauerkraut and/or kimchee. And no, I'm not sewing our own clothes yet. Or probably ever.
Looking forward to seeing my little girl tonight. She spent the weekend with her dad (most likely her grandparents, then), and she has rehearsal for her play this afternoon. Yes, on a Sunday. I sure hope her dad doesn't drop the ball - I have reminded him several times, and it will give him a chance to drop her off and not be responsible for her. I just hope he really does it, for her sake. Of course, the little voice in my head says to remind him again today. Since when did I sign up to babysit my 50 year old ex?
On the burned aquarium in my chest. It's red. The Creme De La Mer is very helpful, and expensive but I can use it at night and make sure that it all gets absorbed into my skin and not clothing. It's really amazing how it takes the redness down a few notches. With the new ass-hole time crunch at work, I need to figure out a way to apply at least some organic aloe vera gel and run to work right after treatment without drying time. My girl and I just cleaned out some tee shirts that are too small on her, so I think I'll chop them up and make little cotton covers to keep the crud from seeping into my bra/shirt. But I am trying to think of a plastic barrier to put between the cotton and bra, so I can hopefully prevent staining of clothing. Imagine if all of my shirts develop stains over the left breast? Yikes. Saran wrap is too pliable and annoying. Any ideas? How is my skin going to hold up for 5 more weeks of this shit? I read so much about the skin basically dying. I started to google pictures but had to stop. If my skin gets anywhere near that, I'm going to request a FUCKING BREAK. Oh my GOD, PEOPLE! You can't walk around with your cancer breast looking like a bag of rotten meat and think that it's helping you.
Wow. Anyway, yes. I will be taking care of my skin as best I can.
Saturday, January 12, 2013
A radiation-less day!
Whew. My bubble is fried. 5 days. How am I going to get through 5 more weeks?
Yesterday was exhausting. To "make up the hours", I got up as usual, got tortured with radioactive laser beams, ran to my day gig, worked through lunch, worked late, and had a gig that night. It was fun, but geez. After, I went to hubby's gig, which was just a few blocks away. We hung out, it was nice to be out and normal. Got home, slept for a few hours. Woke up in a panic, I'm so tired it's stupid, but I have a rehearsal and 2 gigs today.
Yup. All of this was booked before we knew I would be radiated. Though I probably would have booked it anyway.
Looking forward to tomorrow. How can I stay asleep when I finally get home? I'm so programmed to wake up early. And when I wake up, I think it's PTSD that I can't lay back down. After the surgery for at least a month and a half or 2, I couldn't do it. It scared me to have to get back up twice in the same day, the pain and uncomfortableness of the surgery while sitting up was pretty unbearable. And creepy. So now I can't seem to nap, or go back to sleep.
Hoping I survive this day.
Yesterday was exhausting. To "make up the hours", I got up as usual, got tortured with radioactive laser beams, ran to my day gig, worked through lunch, worked late, and had a gig that night. It was fun, but geez. After, I went to hubby's gig, which was just a few blocks away. We hung out, it was nice to be out and normal. Got home, slept for a few hours. Woke up in a panic, I'm so tired it's stupid, but I have a rehearsal and 2 gigs today.
Yup. All of this was booked before we knew I would be radiated. Though I probably would have booked it anyway.
Looking forward to tomorrow. How can I stay asleep when I finally get home? I'm so programmed to wake up early. And when I wake up, I think it's PTSD that I can't lay back down. After the surgery for at least a month and a half or 2, I couldn't do it. It scared me to have to get back up twice in the same day, the pain and uncomfortableness of the surgery while sitting up was pretty unbearable. And creepy. So now I can't seem to nap, or go back to sleep.
Hoping I survive this day.
Thursday, January 10, 2013
Day 4. Frustration, now with weight loss!
Today, I'm feeling a bit sore already. Like, a little sunburn. I know, it was bound to happen. Hard to walk around with my Monkey Boob exposed so I can let it soak in aloe or La Mer or calendula or a magic potion of all three. But I should, and must.
Owie. I was always a wimp with sunburn, because I tan easily. So I'd whine about having sunburn, and folks would say "Shut up. You're totally super tan". Blessing and a curse. So perhaps the "burn" is not as bad as I am imagining. I'll go look in a little while. Right now I'm stressed, as has been the case all week.
Something I don't chat about a lot, I took a day gig a few years back. I needed insurance, and they loved me enough to hire me, pay me very little (though everyone is paid very little, it's a non-profit), and give me full on gangsta benefits! When I have a tour or any gigs, I use vacation days. When I run out, I take an unpaid leave of absence. And I really do love this joint and most of the folks I work with. Which makes it very nice to come to my day gig even if I had just rolled in from my music gig. And it's happened, last fall I remember 2 incidents where I had gotten home from the airport and also from the train on no sleep, with luggage and equipment, straight to the office. And worked a full day. Because I'm grateful to have insurance and decent people around me, for the most part.
A year or so ago, I was assigned to a new supervisor. Why? I'm not sure. My old supervisor adores me, we work well together, he basically trusted me to do everything on my own and I had improved a ton of systems because of my freedom. Now, I have a control freak who cares little about people (strange, given where we work and what her "specialty" is) but cares about nitpicky things and micro-management. So I get the bare minimum done now. I still do my best, but I have no freedom.
So I started back Tuesday, I had been on disability long enough (and had waited for the check long enough), and really needed to get back and get a more substantial check and ensure that I still have this gig to keep my insurance. The LAST thing I need is to lose my insurance now!
So, yesterday, she asked when I would "make up my hours that I'm missing from radiation treatment".
Huh.
It's 5-6 hours a week.
I'm a human being, trying to get my life back together while battling cancer.
Everyone I've told of this incident thinks this is an ass-wipe move.
I know that legally, there is probably a rule that says I need to work 40 hours. But really? You're giving me shit about it? It's 6 weeks of torture. I can barely eat. (See heading! At least I've lost a few pounds, even if it's the wrong way). Give me a fucking break, bitch.
But because she's so by the book, I need to now talk to HR and see what I can do to either make up for the time, or use FMLA time which is UNPAID. I have taken a massive financial hit in addition to, well, having cancer, trying to fight through these awful treatments. I can't afford a cut, but how am I going to pull that time out of my ass?
The radiologist that I spoke with this morning said he could probably just squeeze me in if I want to schedule earlier. But I can barely deal with the early start time I'm at now.
My Supervisor-zilla suggested that I work through lunch. Oh, good. I have no energy and I feel slightly nauseous. Let's not let me get up and leave the building for an hour. I did it today and it sucked rocks.
Why are people ass holes?
I guess one of the things Cancer is teaching me is that some people seriously suck. And it really sucks that I'm the one with cancer. I don't wish this disease on anyone, but really? Maybe it's teaching me to speak my mind more when I disagree with someone. I told her a bit more about what I thought than what I probably should have.
Oops.
Must be the cancer talking.
Back to the nausea. The good news is that I've dropped a few pounds. The other good news is that hubby knows how to cook and knows all my favorite stuff - so tonight he broiled salmon (and I could NOT believe that fish tasted good to me today!) So, today I had only been able to stomach (and only because I forced myself to eat) raw spinach and mushrooms, and a half cup of homebrew yogurt. Add a salmon filet and a spinach salad (yes, the spinach is really working for me somehow!) Thank goodness for him. He has been a pain at times, but I know his heart is good. And I know we're so totally stressed out here. This day gig issue is not helping out, but in an odd way it's bonding us back together. I may even have him on speaker when I talk to HR tomorrow, if I can get time to chat with them. Maybe on my non-lunch break. Bitch.
Ok, it's time to go look at my poor little burned jellyfish and see how bad she looks. God, I hate this. What if I stop before the 6 weeks are over? I know now that I'm in, I have to complete it. They can't re-radiate the same spot. I just want a fucking break. From treatments, from stupid people... I want my exchange surgery now. I want to not worry about my insurance or money.
But, I did receive my Sprouter and Broccoli Sprouts! They cure everything! Yippee! I'm thinking I should start a batch tonight, and also make a new yogurt batch. I'm not going as far as making our own clothes, but I like making more and more on my own.
Did I mention the Shiso Martinis we made last night? I knew I'd find an interesting recipe for the surplus of shiso leaves we bought the other day! I actually hate martini stuff, but it was really mellow. Highly recommended if you can get your mitts on shiso! I could imagine them with a bit of stevia mixed in, but I actually enjoyed it as is.
Hubs is promising homemade popcorn as soon as my girl finishes her homework. It actually sounds appealing. We make it in coconut oil and put freshly ground pepper and salt (ground as well!) and sometimes a bit of nutritional yeast. Wow, I'm almost hungry just thinking about it. Man, this kid had better hurry up!!!
Owie. I was always a wimp with sunburn, because I tan easily. So I'd whine about having sunburn, and folks would say "Shut up. You're totally super tan". Blessing and a curse. So perhaps the "burn" is not as bad as I am imagining. I'll go look in a little while. Right now I'm stressed, as has been the case all week.
Something I don't chat about a lot, I took a day gig a few years back. I needed insurance, and they loved me enough to hire me, pay me very little (though everyone is paid very little, it's a non-profit), and give me full on gangsta benefits! When I have a tour or any gigs, I use vacation days. When I run out, I take an unpaid leave of absence. And I really do love this joint and most of the folks I work with. Which makes it very nice to come to my day gig even if I had just rolled in from my music gig. And it's happened, last fall I remember 2 incidents where I had gotten home from the airport and also from the train on no sleep, with luggage and equipment, straight to the office. And worked a full day. Because I'm grateful to have insurance and decent people around me, for the most part.
A year or so ago, I was assigned to a new supervisor. Why? I'm not sure. My old supervisor adores me, we work well together, he basically trusted me to do everything on my own and I had improved a ton of systems because of my freedom. Now, I have a control freak who cares little about people (strange, given where we work and what her "specialty" is) but cares about nitpicky things and micro-management. So I get the bare minimum done now. I still do my best, but I have no freedom.
So I started back Tuesday, I had been on disability long enough (and had waited for the check long enough), and really needed to get back and get a more substantial check and ensure that I still have this gig to keep my insurance. The LAST thing I need is to lose my insurance now!
So, yesterday, she asked when I would "make up my hours that I'm missing from radiation treatment".
Huh.
It's 5-6 hours a week.
I'm a human being, trying to get my life back together while battling cancer.
Everyone I've told of this incident thinks this is an ass-wipe move.
I know that legally, there is probably a rule that says I need to work 40 hours. But really? You're giving me shit about it? It's 6 weeks of torture. I can barely eat. (See heading! At least I've lost a few pounds, even if it's the wrong way). Give me a fucking break, bitch.
But because she's so by the book, I need to now talk to HR and see what I can do to either make up for the time, or use FMLA time which is UNPAID. I have taken a massive financial hit in addition to, well, having cancer, trying to fight through these awful treatments. I can't afford a cut, but how am I going to pull that time out of my ass?
The radiologist that I spoke with this morning said he could probably just squeeze me in if I want to schedule earlier. But I can barely deal with the early start time I'm at now.
My Supervisor-zilla suggested that I work through lunch. Oh, good. I have no energy and I feel slightly nauseous. Let's not let me get up and leave the building for an hour. I did it today and it sucked rocks.
Why are people ass holes?
I guess one of the things Cancer is teaching me is that some people seriously suck. And it really sucks that I'm the one with cancer. I don't wish this disease on anyone, but really? Maybe it's teaching me to speak my mind more when I disagree with someone. I told her a bit more about what I thought than what I probably should have.
Oops.
Must be the cancer talking.
Back to the nausea. The good news is that I've dropped a few pounds. The other good news is that hubby knows how to cook and knows all my favorite stuff - so tonight he broiled salmon (and I could NOT believe that fish tasted good to me today!) So, today I had only been able to stomach (and only because I forced myself to eat) raw spinach and mushrooms, and a half cup of homebrew yogurt. Add a salmon filet and a spinach salad (yes, the spinach is really working for me somehow!) Thank goodness for him. He has been a pain at times, but I know his heart is good. And I know we're so totally stressed out here. This day gig issue is not helping out, but in an odd way it's bonding us back together. I may even have him on speaker when I talk to HR tomorrow, if I can get time to chat with them. Maybe on my non-lunch break. Bitch.
Ok, it's time to go look at my poor little burned jellyfish and see how bad she looks. God, I hate this. What if I stop before the 6 weeks are over? I know now that I'm in, I have to complete it. They can't re-radiate the same spot. I just want a fucking break. From treatments, from stupid people... I want my exchange surgery now. I want to not worry about my insurance or money.
But, I did receive my Sprouter and Broccoli Sprouts! They cure everything! Yippee! I'm thinking I should start a batch tonight, and also make a new yogurt batch. I'm not going as far as making our own clothes, but I like making more and more on my own.
Did I mention the Shiso Martinis we made last night? I knew I'd find an interesting recipe for the surplus of shiso leaves we bought the other day! I actually hate martini stuff, but it was really mellow. Highly recommended if you can get your mitts on shiso! I could imagine them with a bit of stevia mixed in, but I actually enjoyed it as is.
Hubs is promising homemade popcorn as soon as my girl finishes her homework. It actually sounds appealing. We make it in coconut oil and put freshly ground pepper and salt (ground as well!) and sometimes a bit of nutritional yeast. Wow, I'm almost hungry just thinking about it. Man, this kid had better hurry up!!!
Tuesday, January 8, 2013
Day 2. Less nausea than Day 1.
Well, all that weight-gain complaining (the 10 lbs. that I've gained since the day of my diagnosis... just in case you forgot!) might turn around at some point. Apparently, the radiation makes me queasy. Is it the radiation, is it the freak-out in my brain, is it the stress of not loving my daily visit to The Cancer Center (insert maniacal laughter here, along with some hand wringing), is it having to expose my salt water bag to toxic laser beams?
Whatever. I couldn't eat at all today. And I usually have a lumberjack appetite. I had a handful of spinach and a half cup of yogurt.
When I got home, I found my hubby cooking up the perfect filet mignons for us (is the plural mignons, or migni? I kind of like that, it sounds exotic, and wrong.) I started with the spinach (yes, more spinach) salad. Then, I timidly cut a small piece of the filet. It was perfectly cooked and seasoned. I know I've been a beast to live with, though I would suspect that any *horribly diseased and disfigured cancer patient* would be. I've been so at the end of my rope on everything - the fricking laser beams, the small ocean where my breast used to be, the idea of menopause at 41, and not being able to access things that I would like to be able to access so I can get better without getting worse.
This is life in our beautiful country. I love where I live, what I do, who I'm with, but damn. Give a girl a freaking break.
Anyway, I know he cooked a fabulous meal because he does it a lot, he knew I was exhausted, he knew it was my girl's favorite meal, and - the way to a woman's heart is through her stomach. Or gifts. Also, he knew I was nauseated. So I guess cooking something I really love was a good maneuver. Though, I had only eaten maybe 175 calories until that moment. Not that I would ever condone that kind of behavior in anyone, but sheesh. I guess we won't be having migni every night, so perhaps I'll be ok. At least, maybe I won't bust out of my wardrobe anytime soon.
What if the radiation IS making me nauseous? Maybe I can get an extension on my 6 weeks of toxi-torture. I won't be awake, but I'll maybe be back at my pre-cancer weight. It's only 10 lbs... You'd think chopping off my breast would have helped me lose some lbs., but of course, there's a big ol' bag of saltwater there. You know what would be really cool? Sea Monkeys! I have come to realize that it's almost impossible to kill them. We thought they'd be temporary pets when I got them for my kid a year or two ago, but those things just live on. Do they eat each other and procreate that way? Anyway, it would be fun, I could have my little fellas swimming around in my breast, get sonograms to check in, like when I was pregnant. Airport security would be WAY more interesting. From what I can see, it would be a WIN-WIN! Sea Monkeys for every implant! Then, when someone asks how I'm feeling, I could simply respond: "SWIMMINGLY!!!!"
So, now that I'm 2 treatments in, my poor Monkey Bubble is a little red. I'm exhausted. I'm sometimes nauseous. I feel like a fucking Cancer Patient. And I feel alone in a lot of my decisions, which might be a good thing now. I have been shell shocked by finding out I'm a Cancer Patient. I'm not a survivor - and will I ever be? Will I want to be referred to as someone that survived, like some kid holed up in the basement of a kidnappers home, or someone who's country has been attacked, and their family and neighbors have been killed off - but the survivor was in the loo taking a dump, so nobody saw her? (The moral of the story: Pooping can Save your Life!) No, I won't be a survivor. I haven't been sitting like a zombie (most of the time) nodding my head to agree with everything I'm told to do. Am I a warrior? Perhaps closer to my truth on this crap. But, I'm still so weak sometimes. I can't fight a system that only supports certain treatments. I don't have a mattress full of cash to pay for whatever therapies I think would save my life more humanely. Sigh.
All I know is that I have never been one to agree with everything someone tells me because it's easier, or cheaper, or accepted in mainstream society. Because... well... Fuck That. Do I question things just to be oppositional? Could be, sometimes. But as long as I keep an open mind, playing Devil's Advocate is a good game to play - because you have to look at both sides or all 11 sides or whatever Dungeons and Dragons Geekdom you enjoy. As long as my future breast doesn't look like one of those bizarre things - I'd like it more like a pool ball. Maybe I'll have it tattoed to look like one. I could get a Magic 8 Ball Tattoo and answer peoples most pressing questions.
"Outlook not so good"
Ok, scratch that. I'll probably just get a nipple tattoo like all of the other Cancer Patients. Sometimes it's easier to go along with the pack. But, that is a LONG way down the road. Maybe I'll like having no nipple. Yesterday at the Cancer Center * (yes, the maniacal laughter goes here), I put on my awful robe and sat in the freezing waiting room, and for a moment wondered if my "headlight" was on - didn't even question the one that is still there, but the one that is gone! Is that a phantom nipple erection?
Can I even type that without weird search engines hunting for porn on my blogger??? Gross.
Whatever. I couldn't eat at all today. And I usually have a lumberjack appetite. I had a handful of spinach and a half cup of yogurt.
When I got home, I found my hubby cooking up the perfect filet mignons for us (is the plural mignons, or migni? I kind of like that, it sounds exotic, and wrong.) I started with the spinach (yes, more spinach) salad. Then, I timidly cut a small piece of the filet. It was perfectly cooked and seasoned. I know I've been a beast to live with, though I would suspect that any *horribly diseased and disfigured cancer patient* would be. I've been so at the end of my rope on everything - the fricking laser beams, the small ocean where my breast used to be, the idea of menopause at 41, and not being able to access things that I would like to be able to access so I can get better without getting worse.
This is life in our beautiful country. I love where I live, what I do, who I'm with, but damn. Give a girl a freaking break.
Anyway, I know he cooked a fabulous meal because he does it a lot, he knew I was exhausted, he knew it was my girl's favorite meal, and - the way to a woman's heart is through her stomach. Or gifts. Also, he knew I was nauseated. So I guess cooking something I really love was a good maneuver. Though, I had only eaten maybe 175 calories until that moment. Not that I would ever condone that kind of behavior in anyone, but sheesh. I guess we won't be having migni every night, so perhaps I'll be ok. At least, maybe I won't bust out of my wardrobe anytime soon.
What if the radiation IS making me nauseous? Maybe I can get an extension on my 6 weeks of toxi-torture. I won't be awake, but I'll maybe be back at my pre-cancer weight. It's only 10 lbs... You'd think chopping off my breast would have helped me lose some lbs., but of course, there's a big ol' bag of saltwater there. You know what would be really cool? Sea Monkeys! I have come to realize that it's almost impossible to kill them. We thought they'd be temporary pets when I got them for my kid a year or two ago, but those things just live on. Do they eat each other and procreate that way? Anyway, it would be fun, I could have my little fellas swimming around in my breast, get sonograms to check in, like when I was pregnant. Airport security would be WAY more interesting. From what I can see, it would be a WIN-WIN! Sea Monkeys for every implant! Then, when someone asks how I'm feeling, I could simply respond: "SWIMMINGLY!!!!"
So, now that I'm 2 treatments in, my poor Monkey Bubble is a little red. I'm exhausted. I'm sometimes nauseous. I feel like a fucking Cancer Patient. And I feel alone in a lot of my decisions, which might be a good thing now. I have been shell shocked by finding out I'm a Cancer Patient. I'm not a survivor - and will I ever be? Will I want to be referred to as someone that survived, like some kid holed up in the basement of a kidnappers home, or someone who's country has been attacked, and their family and neighbors have been killed off - but the survivor was in the loo taking a dump, so nobody saw her? (The moral of the story: Pooping can Save your Life!) No, I won't be a survivor. I haven't been sitting like a zombie (most of the time) nodding my head to agree with everything I'm told to do. Am I a warrior? Perhaps closer to my truth on this crap. But, I'm still so weak sometimes. I can't fight a system that only supports certain treatments. I don't have a mattress full of cash to pay for whatever therapies I think would save my life more humanely. Sigh.
All I know is that I have never been one to agree with everything someone tells me because it's easier, or cheaper, or accepted in mainstream society. Because... well... Fuck That. Do I question things just to be oppositional? Could be, sometimes. But as long as I keep an open mind, playing Devil's Advocate is a good game to play - because you have to look at both sides or all 11 sides or whatever Dungeons and Dragons Geekdom you enjoy. As long as my future breast doesn't look like one of those bizarre things - I'd like it more like a pool ball. Maybe I'll have it tattoed to look like one. I could get a Magic 8 Ball Tattoo and answer peoples most pressing questions.
"Outlook not so good"
Ok, scratch that. I'll probably just get a nipple tattoo like all of the other Cancer Patients. Sometimes it's easier to go along with the pack. But, that is a LONG way down the road. Maybe I'll like having no nipple. Yesterday at the Cancer Center * (yes, the maniacal laughter goes here), I put on my awful robe and sat in the freezing waiting room, and for a moment wondered if my "headlight" was on - didn't even question the one that is still there, but the one that is gone! Is that a phantom nipple erection?
Can I even type that without weird search engines hunting for porn on my blogger??? Gross.
Monday, January 7, 2013
Radiation. Sucks. Now with addendum.
I am exhausted and even threw up in my mouth a little when I got home. I've used that as an expression when I've heard or seen something nauseating (good or bad...) but I think I may just reserve it now for when it really happens. I had a protein shake for breakfast before treatment with a cup of coffee and a kombucha, had acupuncture, had a cup of coffee while waiting, had blood drawn and later found out it was for a pregnancy test (um, aren't they supposed to tell me this - or when your life is signed away for medical care, do you no longer matter?), had a nervous breakdown, got radiated, had a nervous breakdown, spoke to the social worker who doesn't think I'm insane, but I do need to take over my own treatment rather than agree to do things to keep my family together, had a cup of coffee on the walk home while I had a mobile breakdown (lucky me, I had on humungous sunglasses today!), got home, helped my kid with homework which resulted in a mini breakdown, but really - she is a smart kid and sometimes acts like she's not so she'll get more help. I had just had enough. I can barely look at hubby right now. He's not the devil, but I do feel like he wants me to do everything the docs say, because the docs say. He nods when I take my holistic treatments, but if I ever mention something that will be costly, or that I consider to be something I could do instead of conventional (and by conventional, I mean covered by insurance) medicine, he freaks. He never pretends to discuss the potential with me. That's all I want. I want someone to discuss how something may help me, in addition or instead of what is currently being offered by my Cancer Team.
Yup. I think they should wear uniforms. Sporty! I might be more inclined to relax if they had on jerseys instead of white coats. I might feel better if they carried around sport bottles and wore sweatbands. Actually, I'd be totally down with all the shit they're trying to feed me. Because they would be more human than these people in lab coats carrying medical charts, with worried looks on their faces when they talk to you. Like, *you're going to die and I'm going to try to stop it but I can't guarantee*. I'd rather see sweat and maybe those weird black smudgies that football players have under their eyes - that would say, Hey. I'm on the team you're rooting for. I'm taking your cancer to the fucking Superbowl, and I'm kicking it's ass. I'd like to hear them actually say that, spit on the ground (of course, the cleanup staff would be mighty ticked off... maybe we could have special astroturf squares laid out for the spitting bit). I don't want them to go as far as chew tobacco, but maybe they could Join the Big League! Of course, that shit probably causes cancer too. Ok, we'll work on this, but I like where it's going!
I haven't looked at my poor Boobzilla yet. I'm sure it looks the same. It should take a few weeks to get those awful tan lines or burns. Maybe I can take a break in the middle. Or, why can't they just hit me full blast with their fricking laser beams and just burn the shit right out of me now? Why 30 sessions? Is it safety or money?
Anyway, I really just want to go to sleep now. It's 5pm. *yawn*. Has my life come to this? Apparently, it has.
Addendum. I took a shower. I have a serious tan. I'm considering asking them to do a full-body radiation once a week. Yeah, it's dangerous. But I'd look so much better. Ok, maybe every other week. Also, white wine is delicious in the evening when you're exhausted after cancer-stress. I could barely eat dinner, which may help me in the long run. I did manage to choke down a big bowl of raw spinach with oshinko and kimchee. What I really wanted was a big freaking glass of Schmailey's. And, I'm making a new batch of yogurt. I can't lie - I'm a yogurt master. It's like Pokemon, but real.
Yup. I think they should wear uniforms. Sporty! I might be more inclined to relax if they had on jerseys instead of white coats. I might feel better if they carried around sport bottles and wore sweatbands. Actually, I'd be totally down with all the shit they're trying to feed me. Because they would be more human than these people in lab coats carrying medical charts, with worried looks on their faces when they talk to you. Like, *you're going to die and I'm going to try to stop it but I can't guarantee*. I'd rather see sweat and maybe those weird black smudgies that football players have under their eyes - that would say, Hey. I'm on the team you're rooting for. I'm taking your cancer to the fucking Superbowl, and I'm kicking it's ass. I'd like to hear them actually say that, spit on the ground (of course, the cleanup staff would be mighty ticked off... maybe we could have special astroturf squares laid out for the spitting bit). I don't want them to go as far as chew tobacco, but maybe they could Join the Big League! Of course, that shit probably causes cancer too. Ok, we'll work on this, but I like where it's going!
I haven't looked at my poor Boobzilla yet. I'm sure it looks the same. It should take a few weeks to get those awful tan lines or burns. Maybe I can take a break in the middle. Or, why can't they just hit me full blast with their fricking laser beams and just burn the shit right out of me now? Why 30 sessions? Is it safety or money?
Anyway, I really just want to go to sleep now. It's 5pm. *yawn*. Has my life come to this? Apparently, it has.
Addendum. I took a shower. I have a serious tan. I'm considering asking them to do a full-body radiation once a week. Yeah, it's dangerous. But I'd look so much better. Ok, maybe every other week. Also, white wine is delicious in the evening when you're exhausted after cancer-stress. I could barely eat dinner, which may help me in the long run. I did manage to choke down a big bowl of raw spinach with oshinko and kimchee. What I really wanted was a big freaking glass of Schmailey's. And, I'm making a new batch of yogurt. I can't lie - I'm a yogurt master. It's like Pokemon, but real.
Sunday, January 6, 2013
Cooking makes me happy! Yay! Something!
Had a nice walk to Korea Town today with the family. It was a gorgeous day, and rather than have a pity party at home, I told the family we were going for a walk. Plus, my girl has been way hormonal and has eaten through her stock-pile of Udon noodles! What the...??? She's a string bean, and she wears my jeans, with a belt. So she's nearly my height, but half my width. Kid jeans with the elastic inserts have been great until now, but she has the inseam of a grown woman. I guess worse things could happen!
So, off we went. Took ourselves a few extra blocks out of our way because it was so gorgeous out. Stopped into the Korean food court for a red bean bun for my kid (and we each took a bite, it was REMARKABLY GOOD). I wished we were all hungrier, because as we sat and munched on the little dessert (not little, actually), I looked around with mad food jealousy - steaming bowls of korean soup with kimchee, little clam shells that were opened and used up, big soup spoons, visible chili sauce on top of soups, sushi rolls, it was just a moment of "HOLY CRAP. I LOVE KOREAN FOOD".
But we stopped off at our now favorite (since all of the Japanese markets in our area closed down a few years back) Korean (with other Asian tendencies) Market for some supplies. A big bag of japanese sushi rice, more noodles, some snacky crackers. Snacky crackers? Also referred to as crack in our home. Those Asians sure know how to make snack food, and once you open a bag, it never gets clipped and put away for later. So, we never open up a bag alone. At least, not that I know of... hmmm. *suspiciously wondering if my husband buys snacky crackers on the sly...* Exhibit A (which is no longer in existence in our home). Exhibit B - which will probably disappear sometime in the night).
Anyway, we got lots of groceries, and made some homemade ramen! Not really traditional ramen, since I didn't spend a week making the freaking broth.
Bought pork belly and cooked it in soy sauce, garlic, ginger, rice wine vinegar, and love. Simmered that for 45, then added to a big pot of water, miso paste, shitake mushrooms, and Miracle Noodles! One might think that Miracle Noodles are the most foul food product on the market - even with zero calories... the package smells disturbing and the noodles are as easy to chew as rubber bands. BUT! If you hold your nose, cut the package and immediately dump the noodles into a colander with hot water running, rinse those suckers out good, you'll never know. And if you add the noodles to a soup (or a red sauce or other penetrating sauce - that sounds pornographic!) it will magically... or miraculously!... take on a whole different and wonderful form. Scooped our magical fake ramen into bowls, added Enoki mushrooms, Daikon radish slices (I like them raw, the crunch is awesome!), and half of a boiled egg - which I'd forgotten until a few spoonfuls in. What I totally forgot was the scallions we bought! But, that gives us something to look forward to when we finish the leftovers!
Now, to ignore the sweet bean cakes we bought. I swear, those things talk. Perhaps an apple will sidetrack me...
Tomorrow... radiation #1! Yippee! At least I have acupuncture first. I tried to relax with a Schmailey's. Ok, I call it Schmailey's because it's Carolans, which is a knock off of Bailey's. But, I like it better. It's so full of fat and calories, but it's DELICIOUS and fulfills both my dessert and drinky-poo wants.
I discussed with hubby how little I drank before cancer. And how it's bad for cancer. But you know what? I'm stressed like a muthafucka! But I still don't drink much, I guess I just drink my thimble full of whatever more frequently than a few times a week. That freaking Schmailey's gets me though. Am I going to get cancer from drinking now? I know once my exchange surgery is past, I will calm down. Right? Unless I get re-cancified. That would suck rocks. But, let's hope that won't happen.
Funny. I feel so vulnerable to cancer now that I have it. Like, my breast cancer sent out some evite to it's friends, let them know it found a cancer friendly body!
Hey, cancer and friends. Get the F out. I'm over it.
Can cancer get cancer? I sure hope so.
So, off we went. Took ourselves a few extra blocks out of our way because it was so gorgeous out. Stopped into the Korean food court for a red bean bun for my kid (and we each took a bite, it was REMARKABLY GOOD). I wished we were all hungrier, because as we sat and munched on the little dessert (not little, actually), I looked around with mad food jealousy - steaming bowls of korean soup with kimchee, little clam shells that were opened and used up, big soup spoons, visible chili sauce on top of soups, sushi rolls, it was just a moment of "HOLY CRAP. I LOVE KOREAN FOOD".
But we stopped off at our now favorite (since all of the Japanese markets in our area closed down a few years back) Korean (with other Asian tendencies) Market for some supplies. A big bag of japanese sushi rice, more noodles, some snacky crackers. Snacky crackers? Also referred to as crack in our home. Those Asians sure know how to make snack food, and once you open a bag, it never gets clipped and put away for later. So, we never open up a bag alone. At least, not that I know of... hmmm. *suspiciously wondering if my husband buys snacky crackers on the sly...* Exhibit A (which is no longer in existence in our home). Exhibit B - which will probably disappear sometime in the night).
Anyway, we got lots of groceries, and made some homemade ramen! Not really traditional ramen, since I didn't spend a week making the freaking broth.
Bought pork belly and cooked it in soy sauce, garlic, ginger, rice wine vinegar, and love. Simmered that for 45, then added to a big pot of water, miso paste, shitake mushrooms, and Miracle Noodles! One might think that Miracle Noodles are the most foul food product on the market - even with zero calories... the package smells disturbing and the noodles are as easy to chew as rubber bands. BUT! If you hold your nose, cut the package and immediately dump the noodles into a colander with hot water running, rinse those suckers out good, you'll never know. And if you add the noodles to a soup (or a red sauce or other penetrating sauce - that sounds pornographic!) it will magically... or miraculously!... take on a whole different and wonderful form. Scooped our magical fake ramen into bowls, added Enoki mushrooms, Daikon radish slices (I like them raw, the crunch is awesome!), and half of a boiled egg - which I'd forgotten until a few spoonfuls in. What I totally forgot was the scallions we bought! But, that gives us something to look forward to when we finish the leftovers!
Now, to ignore the sweet bean cakes we bought. I swear, those things talk. Perhaps an apple will sidetrack me...
Tomorrow... radiation #1! Yippee! At least I have acupuncture first. I tried to relax with a Schmailey's. Ok, I call it Schmailey's because it's Carolans, which is a knock off of Bailey's. But, I like it better. It's so full of fat and calories, but it's DELICIOUS and fulfills both my dessert and drinky-poo wants.
I discussed with hubby how little I drank before cancer. And how it's bad for cancer. But you know what? I'm stressed like a muthafucka! But I still don't drink much, I guess I just drink my thimble full of whatever more frequently than a few times a week. That freaking Schmailey's gets me though. Am I going to get cancer from drinking now? I know once my exchange surgery is past, I will calm down. Right? Unless I get re-cancified. That would suck rocks. But, let's hope that won't happen.
Funny. I feel so vulnerable to cancer now that I have it. Like, my breast cancer sent out some evite to it's friends, let them know it found a cancer friendly body!
Hey, cancer and friends. Get the F out. I'm over it.
Can cancer get cancer? I sure hope so.
Friday, January 4, 2013
Yeah, yeah, yeah... I'm posting again. Final Decision.
Just spoke to the radiologist. Burn me. Start Monday. Fuck it.
I still told him that Tamoxifen is the thing that really scares me. He said: Fuck it.
Not exactly, though I wouldn't have been surprised if he had.
More like, let's not deal with that now. Let's get the radiation done and not muck your head up with any other crap.
There we go. Guess I'll need to shop for some burn coverage show clothes. And caffeine. And perhaps more wine.
I still told him that Tamoxifen is the thing that really scares me. He said: Fuck it.
Not exactly, though I wouldn't have been surprised if he had.
More like, let's not deal with that now. Let's get the radiation done and not muck your head up with any other crap.
There we go. Guess I'll need to shop for some burn coverage show clothes. And caffeine. And perhaps more wine.
Thursday, January 3, 2013
Oh my gosh! Another update today. Meet the newest Lemming in the Cancer World.
I told hubby that I was done making decisions. Whether or not he believes me, I feel better.
The truth is that I'm so overtaxed with thinking about treatments, options, non-options, things I think are barbaric. So I meant what I said. If he says to go do the radiation and take the tamoxishit, I'll just do it. If I have bad reactions, we can discuss it then, and most likely, he will not want me to endure Bad Stuff.
I actually felt relief after I told him. Hung with my girl after my day of Zombie Mommy. Started watching Cape of Good Hope as a possible project for Social Studies. She heard the F-bomb and looked at me in shock.
"What rating is this?"
"PG13"
"Um, are you sure???"
"Please babe. I went to school. I know you hear this stuff. I don't want you saying it, but I'm no dummy."
I told her I'd heard way worse stuff at her age, and of course I wasn't in the mood to rattle off a bunch of nasty words and phrases. But I let her know, I know. The real world is there. I'd rather expose her to it in our home than have her hear friends at school say it and wonder. Yeah. I'm that mom. When I'm not a depressed cancer victim zombie. I always told her that she can ask me anything, if she hears stuff at school or on tv (since we don't have tv and I'm here when she watches anything, it's more about stuff at her dad's house) to just ASK me what it's about. I never had that as a kid. I was left to assume. And you know, when you assume...
Anyway, it was nice to feel like me for a while. I'm calling the doc first thing in the morning. I'm going to tell him to continue as scheduled. I'm going to get a hell of a sunburn on my breast. I'm hoping that the radioactive crap won't travel elsewhere. I'm hoping it won't make me tired. I'm hoping it won't make me nauseous (unless that helps me drop a few cancer pounds). I'm hoping that the docs are right, that this will help me. Because I sure as shit am not going to turn into the Incredible Hulk just to get cancer again. Oh, I'm sure she's heard that word too.
Is it the right decision? Who knows. Will it make my life easier? For the moment, yes. We'd never know what the other outcome would be, regardless of our choice. Like anything in life. What if I'd never met my husband for tea that first pseudo-date? What if I'd stopped playing music for real? (I had an absence in my 20's, about 5 years or so) What if I had a double Prophylactic mastectomy in my 20's like I'd considered? I really considered it. I remember one doc telling me it was like getting a boob job and a tummy tuck. Tempting at that age, or any. Of course, they didn't tuck my tummy, I have cartoon boob at the moment, and I'm gaining stress weight. Plus that recovery was hellapainful! And, I was able to pump milk for my daughter for 9 months. So...
Who knows anything? All I know is that I may need to get some anxiety medication through this process. My brain moves fast, so does my heart. I like to research. I like to read. There's a lot of information out there. And I'd rather be informed or not. Even if I'm no longer going to make decisions, I want to know what I'm up against.
Ok, I'm still scared shitless. But, I feel a little relief thinking that it's not up to me. The fork in the road? I have the GPS on now. No more deciding which way to turn. As long as hubby goes along with it all. I know he wants the best for us. All 3 of us. So I should trust.
*wringing hands, obviously still filled with anxiety*
Random thought of the evening: I'm craving mashed potatoes and a chocolate bar. Luckily, I just brushed my teeth.
The truth is that I'm so overtaxed with thinking about treatments, options, non-options, things I think are barbaric. So I meant what I said. If he says to go do the radiation and take the tamoxishit, I'll just do it. If I have bad reactions, we can discuss it then, and most likely, he will not want me to endure Bad Stuff.
I actually felt relief after I told him. Hung with my girl after my day of Zombie Mommy. Started watching Cape of Good Hope as a possible project for Social Studies. She heard the F-bomb and looked at me in shock.
"What rating is this?"
"PG13"
"Um, are you sure???"
"Please babe. I went to school. I know you hear this stuff. I don't want you saying it, but I'm no dummy."
I told her I'd heard way worse stuff at her age, and of course I wasn't in the mood to rattle off a bunch of nasty words and phrases. But I let her know, I know. The real world is there. I'd rather expose her to it in our home than have her hear friends at school say it and wonder. Yeah. I'm that mom. When I'm not a depressed cancer victim zombie. I always told her that she can ask me anything, if she hears stuff at school or on tv (since we don't have tv and I'm here when she watches anything, it's more about stuff at her dad's house) to just ASK me what it's about. I never had that as a kid. I was left to assume. And you know, when you assume...
Anyway, it was nice to feel like me for a while. I'm calling the doc first thing in the morning. I'm going to tell him to continue as scheduled. I'm going to get a hell of a sunburn on my breast. I'm hoping that the radioactive crap won't travel elsewhere. I'm hoping it won't make me tired. I'm hoping it won't make me nauseous (unless that helps me drop a few cancer pounds). I'm hoping that the docs are right, that this will help me. Because I sure as shit am not going to turn into the Incredible Hulk just to get cancer again. Oh, I'm sure she's heard that word too.
Is it the right decision? Who knows. Will it make my life easier? For the moment, yes. We'd never know what the other outcome would be, regardless of our choice. Like anything in life. What if I'd never met my husband for tea that first pseudo-date? What if I'd stopped playing music for real? (I had an absence in my 20's, about 5 years or so) What if I had a double Prophylactic mastectomy in my 20's like I'd considered? I really considered it. I remember one doc telling me it was like getting a boob job and a tummy tuck. Tempting at that age, or any. Of course, they didn't tuck my tummy, I have cartoon boob at the moment, and I'm gaining stress weight. Plus that recovery was hellapainful! And, I was able to pump milk for my daughter for 9 months. So...
Who knows anything? All I know is that I may need to get some anxiety medication through this process. My brain moves fast, so does my heart. I like to research. I like to read. There's a lot of information out there. And I'd rather be informed or not. Even if I'm no longer going to make decisions, I want to know what I'm up against.
Ok, I'm still scared shitless. But, I feel a little relief thinking that it's not up to me. The fork in the road? I have the GPS on now. No more deciding which way to turn. As long as hubby goes along with it all. I know he wants the best for us. All 3 of us. So I should trust.
*wringing hands, obviously still filled with anxiety*
Random thought of the evening: I'm craving mashed potatoes and a chocolate bar. Luckily, I just brushed my teeth.
Radiation...
Called the doc today. Asked about the percentages.
15% chance of recurrence without. 3% with. Is that worth it? Most would say yes.
But if it comes back, what's the fix? They radiate. Maybe some more surgery.
I went to Africa on a gig years ago. They made me get all sorts of creepy shots. I had to take pills for the prevention of malaria. I had wicked hallucinations and was unable to sleep (see: any entry discussing how my body freaks out with medication). So I asked around, what would happen if I got malaria? Well, they'd cure it by having me take the same exact pills. So I stopped. I never got malaria. And I got a little sleep and didn't think that strangers were following me around. I didn't see people that were not actually there. I was me again.
Was it worth it to stop taking the pills? Of course. I know malaria and cancer are very different. But I know that I felt better having stopped the pills. Even when I didn't know whether or not I would have a problem in the future.
Radiologist seems ok with the idea of me not getting radiation. Interesting. It's not a case of "get radiated or you will die a horrible death" (insert maniacal laughter here). It's a case of wait and see.
I'd rather wait and see on everything. The thing about the tamoxistupid is that the docs are saying that breast cancer cells that travel are not curable. And that scares the shit out of my husband. Me? Notsomuch. Why? I don't know. I just figure, everybody has cancer! Let's see, aggravated by bad diet, environment and stress? I'm stressed like crazy right now, going through the whole cancer patient crap. What if I just stop? What if I have reconstruction and have follow up care? Meaning, monitoring.
Hubby doesn't like that idea. He wants assurance that we did "everything" we could to prevent it from coming back. But, is all of this garbage in my system really a good idea? Are the head games healthy? I feel like I'm so much more likely to die from stress - and of course, stress feeds cancer.
I say, let HIM take all the shit and tell me how he feels first. See if the side effects are worth it to him. Of course, I imagine that tamoxifen would actually have a very different interaction since he's a dude.
He's a dude.
Dudes generally don't think the same as we do. They seem to question less when it comes to medicine. Did I just make that up? Yup. But, that's what my gut tells me, and I can't imagine it's wrong. Women are much more likely to get second opinions. Women are more likely to research and become armed with information. Something that men are intimidated by. Did I make that up too? Yup.
Women are also more honest. Did I make that up? You tell me.
I want my life back. I want to feel like I have a partner with me, open to discussion and possibilities, rather than someone who automatically says "Yes, Doctor. You're the one with the degree in medicine".
I know plenty of folks with degrees of varying degrees, and many don't know sh*t about what they have a degree in! I'm not saying the docs don't know anything - I actually think ours are quite competent. But, what do they know about alternatives to what they do?
The best musicians? The ones that have a knowledge of different styles. The ones that do not lock themselves into one style, criticizing others. Yet, it seems medical "professionals" do just that. I'm including the holistic ones. Some are trained in traditional western medicine and transfer to eastern. I wish I could find one that takes my damned insurance!
Ugh. I kind of hate my Cancer Life right now. Not that I ever enjoyed it, but I've never felt more alone.
Update: after a long walk in the cold air, picking up my daughter from school, and talking to the doc - pretty much having a nervous breakdown - I feel completely apathetic. I don't care anymore. Fuck it. Radiate me. I feel alone, and scared, and if getting radiation makes my husband feel better, fine. If it doesn't work, at least he can't say "I told you so". If I drop dead from cancer, none of this will matter, anyway. My family will be left with shelves full of forgotten supplements and the knowledge that we "did all we could". It's hard for me to look at my daughter right now. I feel like I'm failing her as an independent woman, but I just can't take any more of the bullshit in my head. And what if I go my route, and it comes back anyway? I can't risk the "I told you so" bullshit. Nobody knows. I'm just done fighting.
15% chance of recurrence without. 3% with. Is that worth it? Most would say yes.
But if it comes back, what's the fix? They radiate. Maybe some more surgery.
I went to Africa on a gig years ago. They made me get all sorts of creepy shots. I had to take pills for the prevention of malaria. I had wicked hallucinations and was unable to sleep (see: any entry discussing how my body freaks out with medication). So I asked around, what would happen if I got malaria? Well, they'd cure it by having me take the same exact pills. So I stopped. I never got malaria. And I got a little sleep and didn't think that strangers were following me around. I didn't see people that were not actually there. I was me again.
Was it worth it to stop taking the pills? Of course. I know malaria and cancer are very different. But I know that I felt better having stopped the pills. Even when I didn't know whether or not I would have a problem in the future.
Radiologist seems ok with the idea of me not getting radiation. Interesting. It's not a case of "get radiated or you will die a horrible death" (insert maniacal laughter here). It's a case of wait and see.
I'd rather wait and see on everything. The thing about the tamoxistupid is that the docs are saying that breast cancer cells that travel are not curable. And that scares the shit out of my husband. Me? Notsomuch. Why? I don't know. I just figure, everybody has cancer! Let's see, aggravated by bad diet, environment and stress? I'm stressed like crazy right now, going through the whole cancer patient crap. What if I just stop? What if I have reconstruction and have follow up care? Meaning, monitoring.
Hubby doesn't like that idea. He wants assurance that we did "everything" we could to prevent it from coming back. But, is all of this garbage in my system really a good idea? Are the head games healthy? I feel like I'm so much more likely to die from stress - and of course, stress feeds cancer.
I say, let HIM take all the shit and tell me how he feels first. See if the side effects are worth it to him. Of course, I imagine that tamoxifen would actually have a very different interaction since he's a dude.
He's a dude.
Dudes generally don't think the same as we do. They seem to question less when it comes to medicine. Did I just make that up? Yup. But, that's what my gut tells me, and I can't imagine it's wrong. Women are much more likely to get second opinions. Women are more likely to research and become armed with information. Something that men are intimidated by. Did I make that up too? Yup.
Women are also more honest. Did I make that up? You tell me.
I want my life back. I want to feel like I have a partner with me, open to discussion and possibilities, rather than someone who automatically says "Yes, Doctor. You're the one with the degree in medicine".
I know plenty of folks with degrees of varying degrees, and many don't know sh*t about what they have a degree in! I'm not saying the docs don't know anything - I actually think ours are quite competent. But, what do they know about alternatives to what they do?
The best musicians? The ones that have a knowledge of different styles. The ones that do not lock themselves into one style, criticizing others. Yet, it seems medical "professionals" do just that. I'm including the holistic ones. Some are trained in traditional western medicine and transfer to eastern. I wish I could find one that takes my damned insurance!
Ugh. I kind of hate my Cancer Life right now. Not that I ever enjoyed it, but I've never felt more alone.
Update: after a long walk in the cold air, picking up my daughter from school, and talking to the doc - pretty much having a nervous breakdown - I feel completely apathetic. I don't care anymore. Fuck it. Radiate me. I feel alone, and scared, and if getting radiation makes my husband feel better, fine. If it doesn't work, at least he can't say "I told you so". If I drop dead from cancer, none of this will matter, anyway. My family will be left with shelves full of forgotten supplements and the knowledge that we "did all we could". It's hard for me to look at my daughter right now. I feel like I'm failing her as an independent woman, but I just can't take any more of the bullshit in my head. And what if I go my route, and it comes back anyway? I can't risk the "I told you so" bullshit. Nobody knows. I'm just done fighting.
Quantum Leap of Faith
I can't help but think of my mom through this whole ordeal.
I remember the times she was super healthy. I remember that she hired a personal trainer and worked out, when it wasn't cool to work out - especially as a woman. Especially with cancer. In fact, I think the docs warned against working out. She lifted weights. I think the Nautilus machines were brand new, at least to the general public. I remember thinking she was cool.
Then, I remember the times she was in treatment. Medical treatment, which happened a lot. She would give up mentally. She would eat junk food, something that we never had in the house. We never had white bread like our friends - it was Roman Meal only, which looks very white on their site compared to the very dense, brown bread we grew up with. We occasionally had junk cereal as a treat, and dessert was usually fruit. Sometimes with a scoop of vanilla ice cream, but usually without. But her treatment times meant that the house would be stocked with boxes of crappy crackers, cookies etc.
My mom was a good cook. Really good. Everything was homemade, from scratch. I can't imagine that she couldn't have easily baked cookies to taste like the crap ones she started to buy. In fact, I know she could. This woman could make a pizza crust from scratch, toss it in the air like any respected pizza dude (back in those days, they all did that where we were from!) and make a homemade sauce for it, too.
I know treatment makes one tired. I'm tired just thinking about it. The mental exhaustion that goes along with cancer is one that is rarely addressed. It is usually associated with meds and treatment. Well, I am awaiting radiation and I feel like I could sleep 24/7. My last expander fill was weeks ago. So what do I have to blame for my exhaustion? Exactly.
If I didn't have my hubby or girl, I'd be following in my mom's footsteps. Perhaps if I weren't so vain as well. I just want to sleep as much as possible, eat bullshit "food", and cry. But I don't. Because I can't.
But it brings my brain to treatment. If I didn't have all of this anxiety about treatment, I would be better. I would take my health into my own hands more responsibly, instead of giving up in my head. I figure, if they're going to poison me, what does it matter, if I buy organic foods? Why can't I eat some fucking Nutter Butters for breakfast? And by some, I mean a box.
I think for some, conventional medicine is good because they live this way anyway, so perhaps it's some sort of improvement. For someone like me, is it hindering progress? I feel as if I would be much more myself, better than me, without the questioning. Without feeling defeated by the bullshit medical community that our country offers. There should be more to healthcare than profit for big drug companies. There's no Health or Care in that, as I see.
This shit makes me want to move my family to some small village in the mountains, raise our own food away from the industrial world, live simply. If I die from cancer, I won't even know it. I guess if that's what we're going to do, I should work on my sewing skills. And my sowing skills.
Likely, this will not happen. So I need to figure out a way to get ME back. I'm tired of the docs knowing what's best for me. And I'm scared so I go along with it all. They only know what medical school taught them. They know what these big conventions tell them. They know what the drug manufacturers sell them. I'm amazed that I was able to get an acupuncturist through the hospital. It's temporary, as it seems, through treatment (not including the 5-10 years of meds prescribed, as far as I know). Why the slice of humanity, hospital people? Why are you allowing people to access holistic care in your barbaric system? Is it to shut people like me up? Is it to say that you DO support holistic care as well? I'm thankful for the access, and I really like my acupuncturist. But it really seems to not fit into the whole vibe that is being sold to us all.
I wish I could see 10 years into the future. I wish I could see options - what I would be if I go through all this shit, and what I would be without. If someone could hook up a time machine for me, that would be swell. Quantum Leaping into the future me would be super if we could control it more. Ziggy? Al? Hello???
I did call a holistic oncologist today. They don't accept any insurance, but hey - the initial visit is just over $1000. I'm sure that insurance refuses to pay for health Care because people might actually get better without poisons that seem to be so important to the industry.
I wish I didn't feel alone. I wish my husband would pretend to be interested in alternatives to what the docs tell us is the ONLY answer to heal. I wish he would support me in the ways that I assumed he would. But, as in The Four Agreements, of course I should assume nothing. So, I guess I'm alone. And I have the choice to stand strong here, or cave. I see why my mother caved. I see why she died.
I remember the times she was super healthy. I remember that she hired a personal trainer and worked out, when it wasn't cool to work out - especially as a woman. Especially with cancer. In fact, I think the docs warned against working out. She lifted weights. I think the Nautilus machines were brand new, at least to the general public. I remember thinking she was cool.
Then, I remember the times she was in treatment. Medical treatment, which happened a lot. She would give up mentally. She would eat junk food, something that we never had in the house. We never had white bread like our friends - it was Roman Meal only, which looks very white on their site compared to the very dense, brown bread we grew up with. We occasionally had junk cereal as a treat, and dessert was usually fruit. Sometimes with a scoop of vanilla ice cream, but usually without. But her treatment times meant that the house would be stocked with boxes of crappy crackers, cookies etc.
My mom was a good cook. Really good. Everything was homemade, from scratch. I can't imagine that she couldn't have easily baked cookies to taste like the crap ones she started to buy. In fact, I know she could. This woman could make a pizza crust from scratch, toss it in the air like any respected pizza dude (back in those days, they all did that where we were from!) and make a homemade sauce for it, too.
I know treatment makes one tired. I'm tired just thinking about it. The mental exhaustion that goes along with cancer is one that is rarely addressed. It is usually associated with meds and treatment. Well, I am awaiting radiation and I feel like I could sleep 24/7. My last expander fill was weeks ago. So what do I have to blame for my exhaustion? Exactly.
If I didn't have my hubby or girl, I'd be following in my mom's footsteps. Perhaps if I weren't so vain as well. I just want to sleep as much as possible, eat bullshit "food", and cry. But I don't. Because I can't.
But it brings my brain to treatment. If I didn't have all of this anxiety about treatment, I would be better. I would take my health into my own hands more responsibly, instead of giving up in my head. I figure, if they're going to poison me, what does it matter, if I buy organic foods? Why can't I eat some fucking Nutter Butters for breakfast? And by some, I mean a box.
I think for some, conventional medicine is good because they live this way anyway, so perhaps it's some sort of improvement. For someone like me, is it hindering progress? I feel as if I would be much more myself, better than me, without the questioning. Without feeling defeated by the bullshit medical community that our country offers. There should be more to healthcare than profit for big drug companies. There's no Health or Care in that, as I see.
This shit makes me want to move my family to some small village in the mountains, raise our own food away from the industrial world, live simply. If I die from cancer, I won't even know it. I guess if that's what we're going to do, I should work on my sewing skills. And my sowing skills.
Likely, this will not happen. So I need to figure out a way to get ME back. I'm tired of the docs knowing what's best for me. And I'm scared so I go along with it all. They only know what medical school taught them. They know what these big conventions tell them. They know what the drug manufacturers sell them. I'm amazed that I was able to get an acupuncturist through the hospital. It's temporary, as it seems, through treatment (not including the 5-10 years of meds prescribed, as far as I know). Why the slice of humanity, hospital people? Why are you allowing people to access holistic care in your barbaric system? Is it to shut people like me up? Is it to say that you DO support holistic care as well? I'm thankful for the access, and I really like my acupuncturist. But it really seems to not fit into the whole vibe that is being sold to us all.
I wish I could see 10 years into the future. I wish I could see options - what I would be if I go through all this shit, and what I would be without. If someone could hook up a time machine for me, that would be swell. Quantum Leaping into the future me would be super if we could control it more. Ziggy? Al? Hello???
I did call a holistic oncologist today. They don't accept any insurance, but hey - the initial visit is just over $1000. I'm sure that insurance refuses to pay for health Care because people might actually get better without poisons that seem to be so important to the industry.
I wish I didn't feel alone. I wish my husband would pretend to be interested in alternatives to what the docs tell us is the ONLY answer to heal. I wish he would support me in the ways that I assumed he would. But, as in The Four Agreements, of course I should assume nothing. So, I guess I'm alone. And I have the choice to stand strong here, or cave. I see why my mother caved. I see why she died.
Tuesday, January 1, 2013
Another day of frustration... now with cookies.
It's 10:30. PM. My girl is still awake trying to crunch in her vacation packet. I've been trying to trust her to at least pull out homework when I ask multiple times, yet, I found this huge math packet when I was looking for something else in her school bag this afternoon. She went to visit her dad for a few hours and it looks like nothing got done even though I told him it had to be worked on.
Part of me says, screw it. Let her fail. It'll be a tough lesson.
But the other part says, she needs to try her best. And realize that there are no shortcuts. You can't ignore work and make it go away.
So, the Nutter Butters that hubby bought me before surgery that I'd been severely craving were opened last night - and tonight, I'm doing a number on them. Even though I don't eat wheat. Or dairy. Or crap. The good news is that once I finish them, we will never buy them again. Seriously. Mainly because we're pretty much making all of our food from scratch now. As much as we can. For our NYE dinner, hubby made a ridiculous chili. I love a man that can cook. Let's face it, I love my man and would love him regardless of his culinary skills... but DAMN. He can cook.
I keep thinking about the radiation - it keeps getting delayed. I keep wondering if that's a sign to not do it. I've always looked at western medicine as a bunch of barbaric money making crap. And here I am, without a breast, my nerves are shot, I'm about to sign up for 6 weeks of radiation? 5 days a week? 30 DAYS OF FUCKING RADIATION.
And then the stupid tamoxicrap.
What I really want to do is have my reconstruction surgery and call it quits. If the shit comes back, it comes back. I'll deal then. I'm over this bullshit "medicine". If I didn't have my hubby and kid, I'd probably have skipped any treatment or surgery at all and just lived my life until it stopped. And part of me says it's the sane thing to do now. The only sane treatment I'm getting is the acupuncture.
I'm just over it all. I want my life back. I am sick of people telling me that these things increase my survival rate. My survival rate? You're going to zap me with toxic shit, make me ingest toxic crap for years, and tell me that I'll maybe survive a little longer? In misery?
I find that when I think of all these treatments, my usual pristine dietary life goes out the window. Hence, the cookies and wine. Did I mention wine? I never drank before my diagnosis. Maybe a thimble of wine once a week. Now, it's almost a medication at night to try and trick me into relaxing. But I'm not relaxed. I'm pissed as hell.
I read things about holistic treatments, that all cost a bundle that I don't have, some are illegal... and they all seem to go along with a quality of life. And yes, they increase survival rate. And, even if they don't, they don't destroy the little life left in us. My mom passed right after her 50th birthday. She saw me go to college. I was on my own. And she could die knowing that I was free from our home. I don't wish the same for my daughter, but I certainly don't want her to watch me as I watched my mom, obviously conflicted, hurting, and sick from treatment. Quality of life from everything to nothing in no time. Silently crying when she thought I was asleep. And here I sit, crying, and I know she's still up. She probably knows.
And if I give in to western medicine, does that mean I've given up on myself? If I just go by what insurance will pay for? I feel like a fucking science experiment. I'm a guineapig in a cage, a lab rat, a monkey with her skull removed, so they can poke and prod at my brain and see what funny tricks I will perform.
Hemp Oil... http://www.youtube.com/watch?v=0psJhQHk_GI I've read a lot about it. Why the hell is this illegal?
Part of me says, screw it. Let her fail. It'll be a tough lesson.
But the other part says, she needs to try her best. And realize that there are no shortcuts. You can't ignore work and make it go away.
So, the Nutter Butters that hubby bought me before surgery that I'd been severely craving were opened last night - and tonight, I'm doing a number on them. Even though I don't eat wheat. Or dairy. Or crap. The good news is that once I finish them, we will never buy them again. Seriously. Mainly because we're pretty much making all of our food from scratch now. As much as we can. For our NYE dinner, hubby made a ridiculous chili. I love a man that can cook. Let's face it, I love my man and would love him regardless of his culinary skills... but DAMN. He can cook.
I keep thinking about the radiation - it keeps getting delayed. I keep wondering if that's a sign to not do it. I've always looked at western medicine as a bunch of barbaric money making crap. And here I am, without a breast, my nerves are shot, I'm about to sign up for 6 weeks of radiation? 5 days a week? 30 DAYS OF FUCKING RADIATION.
And then the stupid tamoxicrap.
What I really want to do is have my reconstruction surgery and call it quits. If the shit comes back, it comes back. I'll deal then. I'm over this bullshit "medicine". If I didn't have my hubby and kid, I'd probably have skipped any treatment or surgery at all and just lived my life until it stopped. And part of me says it's the sane thing to do now. The only sane treatment I'm getting is the acupuncture.
I'm just over it all. I want my life back. I am sick of people telling me that these things increase my survival rate. My survival rate? You're going to zap me with toxic shit, make me ingest toxic crap for years, and tell me that I'll maybe survive a little longer? In misery?
I find that when I think of all these treatments, my usual pristine dietary life goes out the window. Hence, the cookies and wine. Did I mention wine? I never drank before my diagnosis. Maybe a thimble of wine once a week. Now, it's almost a medication at night to try and trick me into relaxing. But I'm not relaxed. I'm pissed as hell.
I read things about holistic treatments, that all cost a bundle that I don't have, some are illegal... and they all seem to go along with a quality of life. And yes, they increase survival rate. And, even if they don't, they don't destroy the little life left in us. My mom passed right after her 50th birthday. She saw me go to college. I was on my own. And she could die knowing that I was free from our home. I don't wish the same for my daughter, but I certainly don't want her to watch me as I watched my mom, obviously conflicted, hurting, and sick from treatment. Quality of life from everything to nothing in no time. Silently crying when she thought I was asleep. And here I sit, crying, and I know she's still up. She probably knows.
And if I give in to western medicine, does that mean I've given up on myself? If I just go by what insurance will pay for? I feel like a fucking science experiment. I'm a guineapig in a cage, a lab rat, a monkey with her skull removed, so they can poke and prod at my brain and see what funny tricks I will perform.
Hemp Oil... http://www.youtube.com/watch?v=0psJhQHk_GI I've read a lot about it. Why the hell is this illegal?
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