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.
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