Out of the Closet

... so to speak.

I've kept this blog anonymous for so long. I'm going to glance at it, in full, when I have a moment (thank goodness for insomnia!), and then, I'll go public. It's taken a long time. I started this as a way to update a few people on my cancerous journey - and found that people, strangers, were subscribing. It seemed weird at first, but there are so many of us out there!

Now that I'm 6.5 years into my cancer life, and I'm still productive, crazy, a pretty good mom (or so I'm told!), a wife who has somehow kept up with her marriage and her equally nutsy husband while both working as musicians (which, by default, makes us "not normal" by any means). I don't have any secrets to my success, so to speak. I live life. I make a ton of mistakes. Once in a while, I do things right. And, I like to share those things, so that others can do better than I am doing! It's a community and not a contest. And, I've been in the mood to share a lot more. Cancer is here to stay, but life is short.

It's been a long time...

... and I'm still alive! Yay!?

Sorry for my few stragglers who are still popping in once in a blue moon to see if I've written.

The Cancer World has not been a friendly place. It seems that there has been quite a bit of bullying, competing for "most cancerous" or something. I dunno. It just feels like ego inflation has been at an all time high. I work in the spotlight for a living, I don't need a spotlight for dying.

So I've been sitting back and trying to not look too closely. But, people I love are being hurt. I've been talking them down, behind the scenes. Quoting The Four Agreements has been a help to others, and myself. I like to remember that my friends are not being attacked. The attackers are self-hating cancer patients. Super weird.

But, a few moments in the past few months have started to eek me back into the cancer advocacy vibe. I'll get there. It's just been too ridiculous to even put my own emotions, reputation, or total vibe on the line. Screw that.

Meanwhile, an update on hormones! Yay!

So, for those of you who have been following the bouncing implant, it's been almost 2 years since my last cycle. Yep. In February, I'll be able to say that I haven't needed any feminine hygiene products for 2 whole years! Sounds fun? Nope. My hormones, hot flashes, weight management - a freaking disaster. Of course, the holidays haven't helped. Also, my arthritis. I had a full scan less than a year ago, since we thought it was possible that my cancer had gone all stupid metastatic to my left hip. The pain was unbearable, at times. I say was, but let's just say "is". Turns out, I have arthritis everywhere. Yes. Every freaking toe. Yes, my ass bone. I laugh about it, but it's not funny. I'd rather laugh than cry, which I do anyway when it's bad.

Thank goodness for CBD.  I am prescribed, but it's ridiculously expensive through the state. I buy online, but it's also kind of pricey. But, it works. Sublingually, topically, vapeally. Yep. I made up a new word. My favorite is sublingual because it's so fast.

Mornings are particularly terrible. I mean, I tend to wake up early, and literally lie in bed, look at my phone to try and wake up while my joints scream bloody murder. If I get up too soon, I literally can not walk. Yesterday, I had a photo shoot for a cancer thingy (yep, we have thingies!) and I knew I was under the gun schedule-wise. Got up sooner than I normally would want to, and - you guessed it (maybe?) - I went over. I mean, my ankles couldn't handle my body weight yet. I went OVER. I landed on my iPad tray (which is connected to the bed, or WAS! I removed it last night) which incredibly didn't break (sturdy little thing!), and then somehow bounced onto the floor, on my (non lymphedema) arm. So, there I was. I once was a gymnast. I was a personal trainer. I work out almost daily (except these darned holidays, and these bad arthritic mornings when my cardio is softly weeping), but I could not stand up. With a photo/video shoot in a few hours, I now had a completely red and painful upper arm. From my freaking deltoid, along my tricep, to almost my elbow. Seriously. The entire side of my arm. Bright red. Throbbing and painful. My husband, who had gotten home a few hours before from work (late night, poor guy), woke up startled. I told him it was nothing, and sorry to wake him, and I stifled my screaming and sobbing and hobbled out of the bedroom. I think I dropped my ego somewhere along the way. I felt defeated. I somehow made it to the bathroom, looked at my arm, and laughed through tears. Seriously - why not tomorrow? So, for my crunched schedule - I used my "gym time" to ice my arm, while taking arnica and CBD sublingual, then smearing this arnica goop all over my arm, letting it dry to a crusty icky flaky thing, then washing that off and rubbing some CBD balm into my skin. It was a pretty amazing transformation. About an hour of babying my arm, and it had a much smaller bruise than it should have. A great coverup for clumsy people like melater, and I didn't look like a battered wife. They did have to touch it up at the shoot. And no, I didn't tell them of my 90 year old morning.  I remembered seeing my great grandmother with bruises all over, and now totally get it. She lived with her 4 sisters, all in their 90's, and I don't believe that any of them were wrestling or boxing in their spare time.

So, here I am. This morning, I gave myself the required time I needed, which was about 45 minutes. Looking through my social media garbage. Online window shopping (you should see how many pairs of shoes I bought in my mind!!!) and email deleting. When I got up, the room started to spin. But, I held steadily (onto my dresser) and after about a minute, felt it was safe to venture out into the hallway. I wonder if the day will come when I need to install railings in our hallway. Of course, we could use them to stretch and do ballet moves, so it's not all bad. Hmmm. I do have a few tutu's!

Well, whatever. I now know that I'm not my actual age. I'm twice that. But I'll keep doing my roots and moisturizing and working out and drinking water. Because, my denial will still be riding strong, for as long as possible. Joints be damned.

The shoot was wonderful. A long day. But it was really nice to be surrounded by positivity in the cancer world. I used to be the type to put her fists up and talk back to the schoolyard bullies. No more. Life is ridiculously short. Those people can find other opponents. I choose peace.

So, now that I've been up for almost 3 hours (I woke up starting at about 4:30am - this lymphedema makes my bladder act the same age as my joints!), I'm going to hustle to the gym. After another coffee. My new coffee kick, when hubs is sleeping (we use really nice organic beans, freshly ground, and it's impossible to resist) is my Turkish coffee vibe. I went to Turkey last year on biz, and loved the coffee. I didn't get a chance to buy any while there - but I couldn't stop dreaming of it so I bought this stuff and it's amazing! I tried to make it the traditional way, and it was way too much work for me! So, I did some poking around, and found that a lot of people use it like instant. GENIUS! It's super super finely ground, so a tablespoon of that with a scoop of erythritol or a few drops of stevia, combined with our super filtered alkaline water? (by the way, this has been our magic water filter since my diagnosis - it's INCREDIBLE and worth the $$ - nothing to hook up, free standing!) ZING! Just don't drink the grounds at the bottom (or do... I mean, it's just coffee! I kind of like crunching it a little, but I've been told I'm a little strange) Cardamom in the coffee (built in) makes it extra yummy. When I get home from the gym, however, I enjoy our french pressed organic filtered alkaline coffee with grass fed ghee, MCT oil, cinnamon, cayenne, ginger, reishi, and a scoop of grass fed gelatin (and stevia, monkfruit, or erythritol - they all taste so different to me, so it depends on my mood!) Technically, I'm not intermittent fasting when I have this, but it helps me sustain my faux-fast. And it's delicious.

Ok, seriously. To the gym. In the past 2 weeks, I've been so busy, in pain, etc. blah blah blah, that I've not worked out like usual. And, I'm 5 lbs heavier to show for it. I swear, I have the metabolism of a rock. A rock with cancer.

xo

Life and Death, as we know it.

It's been months. I know. I'm a terrible blogger! I was better when I was going through the sh*tstorm of western medicine. Interesting.

People are dying all around me. I feel as if I'm in the eye of a tornado. Somehow, I'm suspended in time as others fall into the vortex of the graveyard.

But, I go on. I do what I can to help others. I do what I can to keep my family happy. Sometimes, that means lying about how I feel. Sometimes, there's no point in complaining, because it only brings sympathy, or empathy, or some other pathy. If there's no bandaid for what hurts, I'll just keep limping.

Actually, I am limping. I pulled something in my leg a few days ago, but I've been rubbing holistic muscle goop into it, stretching, and it's working its way out. See? No reason to complain. It wasn't enough to go to a doc. I did see my massage therapist who went to town. I didn't even tell her about it, because my neck, shoulders and back are always a mess for a variety of delightful reasons. But, she found that sucker and, she lives by the "no mercy" rule. Well, we haven't discussed that, but she will go TO TOWN on any adhesion until it simply gives up. She jumps on the table, she uses her elbow like a slow but powerful jackhammer. I hope she never leaves NY.

Most days, I am super grateful to be here still. Other days, I feel as if I'm on borrowed time, and wonder when it will run out. Tick. Tock.

Death surrounds us

I have been really quiet, lately. Basically, a whole bunch of amazing people have died around me. The latest was last night. I go between grief and numbness. I wonder when my number is up. I wonder if my short term goal is too ambitious now.

I feel this urgent need to get everything in order. I did have a will drawn up upon diagnosis, but I need to update it and fine tune it. I also need to get all of my paperwork in order. I have been playing around with memorial ideas for a long time, but need to solidify it. I sure hope people step up, because hubby can not handle or afford the burden of stupid crap like that. No flowers. No somber music. No body. Burn, baby, burn. Heck, put my ashes in a paper cup, or dump them into the kitty litter. It doesn't matter. Why do people put so much thought and cash into a dead body? I can't look when there is a wake. It's not the person. It's a bunch of rotting flesh and stuff. They're long gone from this vessel. They're probably floating above, thinking of how gross it is to have their old body laid out for all to see. And coffins? Super expensive... for what? All that land? Really? Why not build a homeless shelter, or a medical facility, or a farm, or a non profit building to help others? A bunch of rotting flesh and bones in very expensive boxes under the ground seems dumb, to me. I know. It's some sort of odd tradition. I don't get it. Light a match and perhaps dump me in the dirt so I can help the world by fertilizing something. Eh. Whatever.

Like I said. Grief to numbness. I'm numb right now. I'm not ready to go. Neither were any of the people I've lost in the past month. It's coming, for all of us. Can I get 2 weeks notice?

Life as an old lady in a not as old body.

Sigh.

So, I have a pretty big deal thing coming up. It requires me to strut, almost naked, in front of a packed room with cameras, video, etc. going on.

I had successfully been losing to my menopause, gaining almost 10 lbs. At my size, other people don't seem to really notice, but I feel everything. It got hard to breathe. It was hard to move.  I felt defeated.

Then I got asked to do this pretty big deal thing. Sure!

Wait, what did I just say?

I can NOT lumber along the runway with a baker's dozen of muffin tops poking out of my tree trunk core like wild mushrooms in the woods.

SO, I've been painfully good. I mean, and don't lecture me, basically eating one small meal in the early evening. Yes, I have my coffee that is loaded with calories and fat, the bulletproof kind of concoction I love. So, there's that. And all day? Water. Tea. More water. A spot of more tea. Way more hydration that usual, which is usually a lot. Some random grapes or whatever is not a 200 calorie protein bar. Around 4:30pm or so, when I feel like I can choose between passing out and speaking with the spirits, I eat. Salad - LOTS of salad. With avocado. Maybe a small organic beef patty. Small piece of organic, grass fed steak. The other night, my daughter baked plain chicken wings. I had 2. THIS IS HARD! How do anorexics do this? I'm probably gluttonous compared to them. *anorexia=not me*

2 nights ago, I was cleaning the place. Nothing major. No big lifting, just doing things. I fell on my non-lymphedema arm. Hard. WHY? Because, I didn't want to fall on my lymphedema arm and end up in the hospital.

So, there I was. Elegantly sprawled on my side, unable to move or speak. I guess I'm not used to being clumsy. This has been happening since radiation. Yeah. The stuff that destroyed me but let my cancer live. THAT radiation.

It was painful enough that I worried I had broken a bone. Which, I have never done in my life. I realized I was able to move my arm, though painfully.

After 2 days of home remedies, my cantaloupe sized bruise is still the same size, but has reached light purple today. It still hurts like a mofo. What have I been doing? Glad you asked.

My Weirdo Treatments for Healing a Bruise so that when I'm doing the Pretty Big Deal Thing:

Ice the first night. On for as long as it felt good, then off to throw the broccoli back in the freezer and warm up. Arnica in between icings.

First Technical Day:Arnica fairly obsessively. Read that bromelain is good. Take bromelain supplements and eat half of a pineapple after measly salad.

Second Technical Day: Witch Hazel and arnica alternating in morning. Make a paste of vitamin c powder. Apply to bruise and let dry. Rinse and repeat. The third application, I left it on and put a huge bandaid not quite enough to fit over it, but good enough, and go to gym. Still need to be as waify as possible. Come home. Shower, witch hazel, fancy new bruise cream just purchased, when dry, apply vitamin c paste, repeat ad nauseum. Eat other half of pineapple. Follow by salad and grapes. Wonder if models hate food or themselves. Eh. I guess if I was making mucho bank for being skinny, I'd weigh about 75 lbs.

So, today is that day. Tomorrow is the Pretty Big Deal Thing.

I have crazy strong makeup that, if layered enough times, will cover it pretty much.

So, what are my plans for tonight, besides worry?  Seems like enough activity to me! Especially since I just did my nails.

But on my nightstand, like last night, will be witch hazel, cotton, arnica, new fancy bruise stuff... yup. A racy Saturday night.

So, there you have it. Hopefully it'll be a lot better soon. Or, I'll need to find a good bulk pineapple dealer.

Bahhhhh Humbug.

I suck. I haven't posted since August. Not that I haven't wanted to. I have had fantasies of writing eloquent, elaborate posts about my goings-on in my life with cancer.

But, it makes me tired and cranky.

So, there's that!

Anyway, I'm officially diagnosed as being in menopause. AGAIN.

First time was on the tamoxifen. Let's give Tamoxifen a big middle finger!

Now, Mama Nature has taken over, has checked out my cavity of warfare and destruction via Western Medicine, and has decided it's time to shut down some operations. Like, ability to make another kiddo. Because, quite frankly, who wants to get pregnant when they're condemned to a lifetime of cancer and lymphedema? I babysat an infant with hubs a while back, and I had to put him down quite often because of my arm. Not because of him - he is a soft, sweet smelling cuddle bug.  How would I cope with pregnancy? Sleeping less than usual? Changing poopie things, etc? Yeah... no. Even if I were wealthy and could hire a full time nanny? No. It's unfair. Not only because I can't really keep up with a baby and life, but because I could drop dead during their Kindergarten Graduation. Seems selfish, no? Also, I'm done having kids, and have known that since she was 3. She's in high school. Yeah. Done.

Don't get me wrong, I love my kid. Like crazy. Also, she makes me crazy sometimes. That never overshadows my undying love and unconditional cravings to just smoosh her beautiful face up and tell her that she can drop her anxiety, her insecurity, her fears. The world is a crazy place, and she's brilliant and shall overcome the BS of society. I hope.

Anyway, it's been very busy. My body has been rebelling in a million ways. Between the hot flashes, the weird dryness (my skin etc. are just dust right now, and I'm assuming my bones are packing their bags to join it, as well - remember when I had osteoporosis? Dear Jebus, I can't handle that kind of excruciating pain again, but I hope it will be more gradual this time)  Actually, this has been a little more tolerable - I guess because I didn't pop a pill every day that basically turned off my woman switch. But still - I'm too young for this crap. My white hairs are having babies. My skin is changing. People still say I look 15 years younger than I am, but dang. I do have days where I think I look exactly my age. Maybe, if I make it to 50 (my short term goal - yippee!) I'll treat myself to a facelift. Except I don't want elective surgery. After all of this? Zoinks.

I googled "plastic surgery gone wrong" and decided to not post a photo. Why? I'm not in the biz of making fun of people. But, I would most likely end up looking like a stretched out piece of cold cut. Eh.

As I think more, I think it might be nice to make it to the age of crows feet. No, I don't want them, but it's still a goal to reach! Let's hope the coconut oil I use on my skin keeps them waiting in the wings a bit longer - which will give me more time (in my fantasy world clock) to get there!  When do folks get those things, typically? I'm addicted to sunglasses, so that's on my side. But, I like laughing. Which keeps me feeling young, but, the wrinkles... ugh. *note to self - try laughing without your eyes*

Smiling, sans eyes.
Dagnabbit. Foiled again.

Well, despite my menopause, hot flashes and all - I'm still here. I may not be a crotchety old lady, but you kids still need to get off my damned lawn! 

Whoa... 3 months? I think I've only had one cycle since my last post!

Yeah. Life has been super busy - as always - but I just can't, or won't, keep up with everything. My brain races, by nature. I used to always follow it, in 47 different directions. Now, I tell it to shut up. A lot.  It's not easy, but I need some sort of breathing space. I'll let you know when/if I find some!

Life has been nuts. My neuropathy is still tingling. Some days, really bad. I don't care how foolish I look in public - some things never change! I shake it around like a rag doll. I work the lymph spots that are not thought provoking in public (I won't go as far as the groin clusters, but will do the neck and underarm and inner elbow spots as well as the whole arm/hand). I'm not embarrassed to do the groin, but in public - I certainly don't want attention from folks who might find that "interesting".

My weight has been frustratingly stagnant. I was actually on my way to the gym when I remembered I haven't sent an update out, via blogger. Even though this is sort of anonymous, I do have actual friends who know who I am. They see me on social media, but I don't post all, health wise.

I'm not sure about the weight, except my freaking hormones. My cycle used to be clockwork. Then, tamoxifen. It turned to painful chaos. It did come back, but my cycle goes from 2 weeks to (so far) 9.  It's been over 5 since my last hit from the uterus. About 2 weeks ago, and again 1, I felt PMS cramps etc. Nothing. Tumbleweeds. Not really - that would likely hurt. But, nothing.

So I have been working out more than ever, and my weight, which would normally respond, hasn't. But, I guess being active is better than not, and I'm not in a horrible place, just a few up from my happy zone. I guess I can't have a 20-something's body forever. There, I said it. I've been working so hard on my health and body, and yes - vanity does fuel part of my drive. But, I have a birthday coming up in a week and, as much as I hate it when I hear it, I do look pretty ok "for my age". Of course, I need to cover those pesky greys and we just had our bathroom remodeled. Why, when we're broke?

Flashback to "death kitchen". I had our kitchen totally demolished and rebuilt, custom cabinets, ridiculous gorgeous tiles, the works. Even a wall knocked down and a half wall built as a breakfast type bar. Or, a bar type bar. It handles both positions equally well. Actually, we don't eat breakfast, so bar bar wins.  Cheers!

This is "death bathroom". Our place is nice, but they sure didn't think about style or function with these essential rooms. If you recall, if I posted, I had always wanted a dishwasher. Got it. I also have always wanted frosted glass shower doors. I hate the curtain thing. Hate it. Hate. It. Got it. Again custom cabinets (matches the kitchen!), gorgeous marble counter, fancy dual-flush toilet, slightly deeper tub (had to do a dance to approve via co-op, apparently), big tiles up to the ceiling, a splash wall of yellow tiles, and voila. Death Bathroom. Honestly? We can't afford it. Another moment of honesty - I don't give a crap. Well, actually I do, since that's one function of said room.

Ok, off to the gym now. I'm not sure how much I can accomplish, but I'm bringing a book so that I can park my butt on a bike at the end of my rope (physical or mental pooping out) and burn a few more. I do enjoy the sweat now - started getting workout clothes that encourage sweat. They work! I used to never really sweat much in the gym, but this is really good for my lymph and circulation in general. Ironically, they're slightly thick, so I look bigger than I am, but I'm not out to impress anyone at the gym. I'm out to make my life as good as I can. Who knew that sweat would help? (and yes, I do sweat in real life, but the gym? They're too cold, in general! Hubs always sweats, but that could be a boy thing).  Until next time... hopefully sooner than December!  ;)

News Flash! I mean, Hot Flash!

Jeez. I know I'm not great with updates recently, but with this epic hot flash on a cool Sunday morning, 3 fans focused directly on my misery, all I can do is try and not pass out. Hence, I type.

This is still early for menopause, of course, but with the Tamoxifen Games, my hormones hate me. These flashes have been sneaking in and out. My period goes from every two weeks to a panicky 8 weeks.

It was hot as heck yesterday and the day before, but today? Nice and cool. Thank goodness this flash hit me in this. Nausea, profuse cold sweat, panic, wanting to peel my skin off like an amphibian. I'm sitting here in the kitchen, while hubby sleeps, in my undies with fans focused. I can't really take much more off, so I sit and wait as my entire body gives my spirit the middle finger. 

I'm going to have to start carrying around my Hot Girls Pearls bracelet for real.

When I was on the Toxicphen, my most major flashes happened in winter - I'd be walking around in the snow, stripped down to a tank top. Now? Egads. Between the flashes and lymphedema, I'm going to dislike my favorite season... a lot.


Anyway, went to my oncologist last Friday - 6 months late for a checkup. Why? I'm tired of docs. I saw all the others - GP, OB/GYN, dentist, blahblahblah. Had some work done on my tamoxified teeth. Everything else ok, blood a bit wacky but we're adjusting my supplementation and are going to recheck in a bit. But oncology? UGH.  Anyway, though we hate the hospital, our doc is cool. He knows we hate it. He booked my appointment himself. He spent extra time, as he always does. We like each other. He said, as always, I look great. It's cool, I'm taking extra good care of myself. Neurotic about working out and eating well. If I look at a photo of cake, I gain. It's a combo, in my opinion, of the tamoxifen screwing so badly with my hormones, and possibly aging. But my metabolism took a serious nosedive. Luckily, I have major OCD and have been too stubborn to let it go for too long. I've decided that I want to die totally hot. Life goals? Death goals? Eh. It's just a funny thought that when I'm cremated, I want to have a 6 pack. Hopefully that'll be less time in the cooker, and perhaps a little discount in the process.  ;)

Ah. These fans are keeping my nausea in check. I was about to dress and go to the gym, but I'd hate to have a hot flash there. Between the smells of smelly gym people, the looks of curiosity, the "are you ok" BS, and the fact that I don't want to know 97% of the people there, I'll wait it out.

I'd love to spend Mother's Day with my mother, but cancer stole her from me, 26 years ago.

Days like today are bittersweet. I can't walk around without seeing families taking mothers out, she in her "coolest" dress, holding dying flowers, children and husband slightly uncomfortable in their Sunday Finery, wishing that they could just hang out in sweats and eat microwaved popcorn in front of the TV. While they facebook on their phones.

Ah, Mother's Day.

I remember when I had a mom. It was a long time ago. She was the one person on the planet that I could look to when everyone else hurt me.

Honestly, Death, I could have given you a long list of folks that you could have taken away instead of her. A bunch of motherf*ckers who just needed to go. Not her.

At least I was on my own when she passed. I think she tried to wait as long as she could, to make sure I was far away enough.  So I could try and stop that pain cycle.

Well, it's 26 years later. Amazingly, a lot of those folks no longer affect me from afar. Perhaps because I've physically removed myself from their realm, but it took a long way to remove myself mentally. There are days... trust me. Usually set off by a familiar looking stranger, or an action seen, or a voice - but I've gotten pretty good at turning a blind heart that way. Why? Well, what good would it be to send hate to a stranger that only reminds me of a bad space? That person can't help how they look or sound or act, even in the most douchebaggy of ways. At least, not at the moment it happens in my radar.

Yeah. Who actually enjoys these days? Sure, it's nice to acknowledge folks. But, it's harsh to pressure society like this. I like the Japanese holidays - children's, women's, men's, aged, etc... I mean, women who have lost their moms, who had abusive moms, who are moms to criminals and addicts, women who can't become moms, no matter what hocus pocus or medical miracles they've tried... so, a LOT of people take this day to say, "Hey! Society tells me I'm an asshole/loser/failure today! I'll go out and drink until I'm blind! Yay, me!!!"

I know of very few functional families. Mostly, what I see in my friends and acquaintances, is that we all are imperfect. WHAT???

Yup. All of us. And we don't need no stinkin' holiday to remind us. I think I'll take the American holiday calendar and edit for our home. I'm fairly certain that  a lot of Japanese holidays shall be celebrated. This can only mean one thing - MORE POCKY!!!

The Big Freaking Sleeve

I started physical therapy after "winning" my fight with insurance. They seemed to think that I should go to a different state for treatment - a 2 hour train ride (with a cab, likely around $50 minimum for the trip, plus my $50 co-pay). So, basically, living in NYC - a virtual haven of everything you ever need and don't need, I was being shipped out to try and achieve the impossible. For my medical condition, caused by my other medical condition's treatment.

I am grateful for the therapy. I don't think it's the best I could get here in town. But, the hospital and therapist are ok. There is a therapist who specializes in JUST breast cancer related lymphedema. She charges under $300 per session. I got my first bill for the hospital sessions, and each one is over $2000. My copay is still $50. Now, why in the hell wouldn't the insurance company send me to a specialist who is out of network, send her the $250 and make me pay the other $50? It don't make no sense.

So, because I'm a research fanatic, I probably know more about my condition than she does. But, because I'm thorough and don't take answers as gospel, it's going well.

I got a vibration plate. Sounds sexy, no? No. Unless you feel totally hot when every ounce of fat, loose skin, and your very soul shake at an alarming rate. However, I love it. It feels great all over - weird, but great. I sometimes watch Netflix on it. I sometimes exercise (obliques and squats) on it. I sometimes just think. But, that's rare. Anyway, if you have lymphedema, or not, it's a good thing. Hubby likes it for his back and tight hip. Daughter likes it (on low) when she stands upon it, holding our crazy cats. Purrrrrrr...

I also got a custom Juxta Fit sleeve and glove, to wear at night.  Egads. But, it actually is amazing. I am grateful, even though my stupid insurance has a $2000 deductible on equipment. Farging Bastages. It's almost like I have no insurance at all. Guess we'll be foraging for dinner in the clearance bins for a bit.

Bah.

I was really sick for a bit there, and give the credit to my post-cancer immune system. I'm going to have to put a new pre-cancer immunity on my Christmas list. But, I'm still one of the lucky ones. I'm still here and able to work and smile and wear sexy compression gear.  Though, I'm forever grateful for my LympheDivas. At least my stupid arm can look cool, even when it doesn't feel cool!

Immune to immunity

Well, I've been sick for over a week.

Naturally, this shouldn't be alarming, in February.

But, last weekend, after a stint as an undie model at The Javitz Center, (yeah, yeah, they wanted actual breast cancer patients for these "survivor" bras... I'm not changing careers to "old lady model" anytime soon - unless someone's asking?), I was exhausted after both show days. But, I'm used to being busy, working, not sleeping - this was different. I thought, maybe it was emotional, to be on the runway line with a bunch of 20 year olds who don't seem to eat a lot, and definitely can't fill in their own bras yet...

But, the day after day 2? Holy crap. Like I had just come home after a 2 month stint in the snowy alps, without more than a romper to wear, some flip flops, and a receipt from the grocery store. Any grocery store.

I couldn't move. I could cough and sneeze. A lot.

I continued the week as such. Until now.

And today? Achy like a mofo. Been having hubby Gua Sha my back every evening. It never gets too red, but it happens fast, and it's gone by morning. My body has a ton of bad qi and heat. Before you judge or "ewwww!", try it. Find someone who does this (or cupping is easier to find and just as effective, but I like the scraping motion a little more, but that's personal taste!) or get a chinese ceramic soup spoon and have someone do it to you. Warm up the muscles with massage (ahhh!) and be sure to use a good lubricant or you may have damaged skin. I'm sure there's some good youtube available out there - I'm just too sick to look it up for you. See: first line of this entry.

So, I've made tons of soups this week. I've been doing my best to not die. So far it's going pretty good.

I was in so much pain that I rolfed!!!

Years ago, I went through a series of rolfing sessions - maybe 15 or so. It took my chronic, congenital scoliosis and helped me be in much less pain. Since cancer, and all of the burning and mutilation, I've been back once. We were unsure how to treat me, it was so close to my reconstruction (maybe 6 months) but it was still helpful. Unfortunately, Rolfing is expensive. It's worth it, but Cancer is also expensive. Back then, I put Cancer first. Now? I like my holistic ride. So, I emailed my Rolf Expert and found a spot to go in today.

My body is carrying stress and pain in completely different places, since the lymphedema. I've never had lower back pain. I mean, never. It was always my neck and upper back and shoulders, like a mofo. I mean, the kind of pain that makes you want to cry much of the time. I've lived learning to deal, stretching, and just accepting it as "my pain". Now? More. But also, a better head for this situation.

I was surprised when I started to feel my lower back during massages. My therapists before lymphedema (B.L.) were always shocked at how strong but free of tension my lower back was, considering the rest of my mess. Now? I guess I'm like all the whiners about their lower backs.

Everything feels different. Tension feels different. I can't take my health history away, so here I am.

I'm glad I went back. I am going to do my best to not wait too long - maybe a few months, but I think definitely by summer. Did I mention that it costs 3 times what I pay for a massage that ain't bad, across the street? It's also not a massage. It's better in most ways, but not relaxing. I need to chill more.

Hubby just flew home today and left for the gig deliriously exhausted. I think maybe I'll splurge and buy us a massage date day. Dinner plans with friends and gig tomorrow. We need more us time, including our old people aches and pains! 

So many calories, so little time.

Well, my quest continues. Which one? Huh. I guess all of them.

But the weight.

The funny thing is that, to look at me, I probably look almost the same at my current highest/lowest.

But I feel such a difference. And I can't seem to get to the good zone. I get close, and then the rubber band kind of snaps back in my ego. I never know what's next in the Life of My Uterus and other things that affect it.

I was so good today. Burned a ton of calories. Had a grapefruit and a lovely nut bar. Came home, had a super clean salad.

Then, my daughter crying and struggling with an assignment that should have been done centuries ago, requested pizza. I get comfort food (as I stuff a brownie into my pie hole). I ordered her a medium mushroom, an order of garlic knots, and a chef's salad. I know. I had salad. In fact, I put away enough in the fridge to feed a large rabbit family. But, I do things. I have quirks. I love unhealthy salad.

So, I guess I did ok, considering. My stress? How would you feel if you couldn't make heads or tails of your high schoolers math assignments? Oh. I guess that's likely true for most parents. I also guess that I felt this way since she entered 3rd grade. Color inside the lines? Hah.

Time to finish this homework. As much as I want to just figure it out and do it myself, it's the process for her, not the grade, that is important. Om. Seriously. Om. Come on... kick in... Om.

Burn, baby, burn!

Sigh. 2 nights ago, as I was making my 40th pot of soup for the month, (seriously, I've been a soup making fool!), the soup seriously jumped out at me - hit my right hand and my left upper chest.

Luckily, the lymphedema is on my left side. Oh... right. That's also where my missing breast's substitute sits proudly. Not feeling a thing.

I freaked out but luckily there was just a red splotch that went away yesterday.

What's crazy is not being able to feel your body.

I mean, sometimes I hug someone or bump into someone (usually it's their fault). I feel an echo of the bump. It's awkward. I remember once slumping on the couch with a mug of tea. I set it upon my foobie. I then realized, it wasn't hot. I then THEN realized, it was.

And, then, sometimes I have phantom feelings. Cold breeze. Hot flash. Hear baby cry. Eek.

Why do good boobies (people) die when bad boobies (people) live?

My hand still hurts and is red. It was freezing yesterday and today, and I didn't wear my right glove. Cold as heck, and 3/4 of my right hand wanted to punch me. But the 1/4? Like an old lady somehow possessed that burnt part of my hand and was having the most epic hot flash in a sauna with a heating pad suit on.  Yup. She needed the brisk air.

System is still messed up. I'm thinking I'm due to stay in this hormone hell until I'm gone. Cherish the journey? Yeahhhhh. I would it I wasn't having hot flashes and hormonal swings. Though, I guess it's kind of like a hot summer's day at Coney Island.

How useful are we?

Some days, I feel like I have so much to try and contribute to the world. Other days, I feel like I'm all used up. Why do we continue when we're used up?

No news is good news, bad news, or too busy to write.

If you picked curtain #3, you're RIGHT!

No good news, really. Arm sucks. Breast hasn't magically grown back. Usual battlegrounds are in use.

Bad news? Eh, who knows at this point. It all blurs together - my new normal is so different than what I had for so long. Hard to get used to it all. But, here I am.

Some days, I feel invincible. Like, I'm going to be ok for a few more years. You know, at 100% of whatever I could possibly have in me. Other days, I feel like I'm playing a cruel video game and I have half of a heart left out of 10.

But, maybe I can find some sort of a "cheat code" to life. My daughter told me about cheat codes one day, and I said, well that's cheating. Is that really fun when you're playing a game? Right now? I'd definitely like a cheat code, as long as it didn't downgrade my happiness, or make me feel worse physically and mentally (see: happiness).  

Meanwhile, the holidays loom. Last year we gave away our tree. It served us well, but we decided against putting it up. I keep suggesting putting our favorite ornaments on our houseplants. We have so many (plants, not ornaments). Maybe I'll just do it. In my spare time. Get it? Spare. Time. HAHAHAH!

Does my Lymphedema make my arm look fat?

It feels SO heavy and full today. I have been nonstop for the past month+. Not enough sleep. Too much working. I'm so glad I am now wearing a sleeve during the day, as I know it helps so much.

In fact, I get compliments on them. People ask where they can get them - they think it's a decorative thing! *I wish*

Maybe my lymphedema will force me to rest more. I caught a cat nap earlier, and I fell into a full on dreaming sleep, in 30 minutes. 

Interestingly, I think my arm looks smaller, now that I wear my sleeve. I mean, when I take it off, it looks kind of puny. My other one? I work out, and it does show. Lefty does just as much work, but somehow it looks smaller. The good news is that it looked that way before the lymphedema set in (one of the signs for me was when they looked even, and then it looked bigger - since I'm a righty, it was always the bigger arm). So, yes. I'm grateful for that. Of course, when I wear the sleeve, I hate how my arm DOESN'T look rocked. Muscle-wise, anyway. It looks like a girl arm. Like, a skinny fat arm. You know what I'm talking about - the slim girls who can't lift a pencil. Soft, mushy arms. I know there are worse things, but I like feeling AND looking strong. I want someone who is potentially out to mess with someone to look at me and think, "Hm. That one looks like she could put up a good fight". Yup, I always want to avoid a fight. 

So, here I am. Life sentence of a sleeve/gauntlet, exhausted beyond belief! Exhausted, delirious, and today I actually skipped the gym. Other than traveling, I'm very consistent. since I only had about 3 hours of sleep last night, my pillow and I needed to be BFF's. Imagine, if I'd gone to the gym at my regular time, I would have had 1 hour of sleep. Yes. I do believe I made the right decision.

Is it PTSD, fear of the unknown (same thing), or having a teenage daughter (same thing)?

Sigh. It's been a long time. Every time I think of blogging, I'm too busy. I have barely seen my husband in a month, and yes - we live together and love each other!  2 freelancers are sometimes not even ships passing in the night. But, we love what we do. I wish we made more cash for the splash, so that we could afford more time together (eh, maybe a coffee once in a while?), but, we agree on our life choices and will never change ourselves or each other. So, here we are. Perhaps it's one reason we're so in love. A lot of first dates!

Got more lymph sleeves, from LympheDivas - these are way cuter!!! People ask where they can get them (without lymphedema!). People think I have full sleeve tattoos, or that I have a quirky but cool sense of style. Maybe I do - but this is necessity.

My teen daughter? She's an amazing person. But, she's a teen. So much of my time home this month has been spent Momming. Hubby is an incredible parent. Ex hubby? A disaster. In fact, every time my daughter returns from his place, we work so hard to get her as close to human again as we can. But, I divorced him. We teach her, and show her affection and love her, discuss values and morals. And we pay for everything. But, we make our choices in life, and hubs and I choose to be good people.

But, anyway, it's so hard when you're tired, in pain, overworked, traveling too much, and not seeing your loves enough. Fuses are short. Tempers flare. And other catch phrases that describe the situation. But, here we are.

I head out again this weekend, and then next week am slammed again. I'm not sure exactly when I'll rest, but I'm hoping before my tryptophan induced Thanksgiving nap. Which actually doesn't happen to me, since I am not the biggest turkey fan (that stuffing, though!!!)

My acupuncturist left the hospital. She has saved my life. The whole place is crumbling, and the main reason I've remained a patient there is for acupuncture. Now? My oncologist is ok, but his assistant is a total idiot, and rude as hell. Can I find a new oncologist at a friendly place with integrative therapies? Can I also find a unicorn to ride to all of my gigs on? I may need a pegasus, but then - what's border control like when leaving the country? If it smells like pegasus droppings, I'll take a plane. Though, some of them WISH they could smell as good as pegasus droppings.

Besides magical creature dung, life isn't awful. Found a massage place nearby where they actually do a nice job, cheap. The best part, however, are the signs on the walls. "NO HANKY PANKY!"  It makes it more charming. And less disgusting.  Been there twice, and am definitely a fan. The first time was a 60 minute reflexology session. Heaven on two feet!  And deep!  Next, full body, sans arm. She asked if I got hurt, and when I told her it was lymphedema, she totally seemed to understand. Both clinicians were good instinctually, and I'm so happy they're close and cheap! Did I mention, close and cheap? The only thing I will say about those places - bring earplugs! Curtains partition the rooms, and sound travels, no matter how much Kenny G they're pumping. Plus, you need earplugs if that's your only ambient noise. Seriously.

Wishing I had better news

So far, my insurance has rejected my appeal for a lymph specialist. Because, clearly, they would rather pay for a lot more crap down the road if I have a giant arm.

I've been taking matters into my own, incapable hands. One of which is numb a lot.

If I wear my sleeve/gauntlet idiocy starting around 4:45 as I leave for the gym, and leave it on until night time (yes, I take it off to shower, and yes, I take the gauntlet off and stuff it in my bra as I use the bathroom and wash hands - glad it's not a one piece!), I feel much more like me.

Except, I look like an idiot with a weird arm.

I can't believe nobody has come up to me declaring their firm belief that one should not wear just one athletic sleeve. You know. They're all the rage. Compression sleeves for people without lymphedema.

Meanwhile, back in my world, these things are expensive. I wish I could just go buy an athletic sleeve. I could get 5 for the price of one lymphedema sleeve. The gauntlet is a separate purchase, but still. I don't have a therapist (can't afford that price tag, nor should I have to, since I have "good" insurance) to tell me what to wear. But, I don't want to injure myself of make the condition worse. Because it sucks as it is, trust me!

Oh, my aching lymph...

Well, I called a few places, and nobody is in my insurance network. Lymph is big business. One of the best, so I hear (and I did meet her a few years back), is a whopping $250/session. Out of network. Also, out of price range. I'm having a heck of a time finding a reasonable costing lymphedema specialist who is attainable on a regular persons budget (keep in mind that I am a musician, so my budget is much lower than most!)

I know I have it. I know I have it. I know. I have tried wishing it away, hoping I could fool my body with my mind. My body is way too smart and/or stubborn to change. The pressure and pain are real.

So, in my frustration, I tried on my sleeve/gauntlet that I got as a preventative measure. I wore it about 15 minutes. It looks dorky as hell. It makes it impossible to type. And, it felt wonderful.

Crap.

I didn't want it on too long. I did some self massage to hopefully drain some of the fluid and then popped it on. Showed hubby. I need someone to bedazzle something to put over it. Stat.

I have a plain black and a plain purple. I mean, what's the point of having a dumb thing to wear for a medical reason if it doesn't look super crazy? Plain? Me? ME?

Sigh. Anyway, it's been off about 5 minutes and I'm already feeling it again. It was my little experiment. I was right.

So, the search continues. I need someone to help. I am hoping to see my acupuncturist next week, before I get on a plane. Of course, no needles on the affected side, but she can certainly drain some of that energy out. I mean, for real - this does not feel amazing.

Also, think of the tan lines.

I hate looking up lymphedema online, because I see these horrendous, giant limbs. Infections. Grossness in general. I don't want to be that. I want to be me. I'll accept the fake boob, the scars, the lack of a nipple and a crude tattoo job by my surgeon to trick my brain when I look into a mirror from far away. Got it.

But a giant arm?

NOOOOO!!!

I found this online. Because, you can pretty much learn anything on Youtube. It seems legit. I tried it. I actually felt a little better, but perhaps because one of my cats sat next to me and rubbed my arm as I followed the destructions. I mean, instructions.

Who knows how bad it will get. I'm hoping that with my determination, OCD, and will to not have a giant, mutant arm, I will somehow keep it to a dull roar. It feels all sorts of f'd up. Is this my future? Eek. But, oddly, my arm feels as heavy as this one looks.