Monday, April 20, 2015

An Answer for Nyssa

So, I got a comment from someone recently, asking for my advice.  Here is her comment:

Hi, I found your blog through pinterest because you created awesome lessons for your sunday school class. [Why, thank you.  The bracket part is me, Kar.]  I read a few other posts and learned you had cancer. I read a few and honestly I was scared off.

I was scared because my sister has cancer. A weird scary cancer that multiple doctors and cancer clinics don't exactly know what kind. It's scary and heartbreaking. And I while I love that you're honest and upfront about everything with your cancer. I got scared. I didn't want to learn things about what my sister is going through that I CANT DO ANYTHING ABOUT. It's torture which is nothing to say about what she is going through. My coping mechanism is distance. To shut it out. Because it depresses me literally. I can't be a strong supporter to help her be positive and happy because I want to curl up in a bawl and cry.


Anywho I am commenting because I wondered if you can give me advice on how to help her. She has finished her first treatment of chemo and is on a feeding tube. It's miserable and a lot of what you described about being confined and all the crap about white blood count. Is where she is at right now. She is 24, no kids. You'll probably say call her. (I live five hours away, not too bad) but I'm afraid. I'm not strong and I'm angry and depressed. Cancer is yucky and you are awesome I appreciate your blog and I truly am sorry for your continuing struggle and your simple wish to just "not be sick anymore" Love from Nyssa 

Okayyyy.  Rubbing my hands together.  What you can do to help your sister.


Girrrrrl, I appreciate that your coping mechanism is shutting things out and distancing yourself.  And under normal circumstances, I try to support people with different coping mechanisms than mine. My coping mechanisms are right for me; your coping mechanisms are right for you.


Buuuuuuut.... having been in your sister's place (though not as badly as hers, from what it sounds like - feeding tubes were never involved in my case, luckily), I think...  Well, I'll just tell you.  She needs you to call her.  To text her.  To visit her for a weekend (You're right - five hours isn't too bad).  She desperately needs all of the support she can get, even though it's torturous for you to see her in this condition.  


When I got diagnosed, had my mastectomy, started to go through chemo, etc., it was fascinating what happened.  Some people whom I thought were some of my closer friends just...disappeared.  They never visited, called, texted, or anything.  And then some people who had been only acquaintances came out of the woodwork and were so cool and so supportive.  Now, don't get me wrong; most people were above and beyond just amazing.  But those few who distanced themselves - that hurt. And I'm sure they were like you - just uncomfortable, or not knowing what to say.  Or maybe it hit too close to home for them.  And I'm not mad about it and don't dwell on it, because I get it.  It's hard to watch people go through this.


So imagine my disappointment and hurt at friends distancing themselves, times ten billion if one of my sisters had distanced herself from me.  I know you're angry and depressed and scared.  When  you call her, your heart might break.  I like to think of it as breaking open, though.  Exposing yourself to fear and anxiety and depression because of her plight will help you develop your charity.  As you serve her, your fear and depression might actually improve.  


And since her case is complex and you don't know how things will turn out, I'd make choices that wouldn't cause me regret later on.  I pray with all my heart that she will conquer this beast.  But if she doesn't, I wouldn't want you to regret distancing yourself from her.  Or if she does conquer, your relationship might be damaged.  She might be really hurt.


In short, jump in with both feet.  Call her.  Send her care packages.  Send her cards every now and then.  Text her often.  Love her to pieces.  You can crawl in bed and sob in private; heck, cry in front of her. It's okay to cry together.  You don't have to be strong for her.  You just need to be present. For her sake, be there for her.  You don't have to think of anything to say.  Just listen.  Express your love to her.  Do anything you can to lessen her load.  She needs your strength.  She needs your love.  


This might not be the answer you were looking for, but from a survivor's standpoint, and in my opinion, that's what you should do.


If you're looking for care package stuff, here are some things I suggest:



1.  One of those little hand-held fans that you can turn on, and they fan your face.  For when she has hot flashes.

2.  Hemmerhoid cream.
3.  Tucks hemmerhoid thingeys.  You literally tuck them between your butt cheeks.  They feel amazeballs when you've got the 'roids.
4.  Immodium.
5.  Stool softener.  Yes, items #4 and #5 seem to oppose each other, but depending on the day, week, or month, she'll be needing one or the other.
6.  Funny books.  She doesn't need any of those feel-good books about how she will conquer this, etc.  She needs to LAUGH.
7.  Hats.  Hats, hats, hats.  Summer's coming, so get those knit beanie ones.  Those will keep her head warm (it will get cold, even when her house is warm).  This company called TLC makes them.  Take a look online.
8.  Propel.  You have to drink tons of water, and plain water gets really old when you're on like your fifth liter of the day.  Flavored water.  Or, even better, those little individual flavor packets that Propel sells that she can pour into a water bottle and shake.  Those will be lighter to send. :)
9.  Hard candy to suck on when her mouth has that metallic taste.
10.  Loungewear.  Short sleeves and shorts. Even if it was the middle of the winter, she would need this.  Because of the hot flashes.
11.  A heating pad.  For her tummy.
12.  Things to binge-watch.  Like television series.  I highly recommend, if she hasn't seen them, Downton Abbey, Call the Midwife, and the Elizabeth Gaskell Collection.  Unless she digs other kinds of shows.
13.  Baby wipes.  For the bumb.
14.  A full-sized, warm blanket.  Because she'll have a hot flash, and then she'll suddenly be freezing cold.
15.  Clorox wipes.  Her caregivers will need to wipe down her bathroom every single day to try to keep those germs at bay.  
16.  Those face masks you get at hospitals.  She can wear them, or she can make other people wear them when they visit her.

So yeah.  Don't be mad, Nyssa.  That's just my take on it.  Step out of your comfort zone.  For your sister's sake.  She needs you.


Compression Garments - Pfffffft.

Now don't freak out on me.  I'm not nekked.  Look more closely.  This is the getup I've been sporting for the last week, under my garmies and a shirt. (I thought my hot flashes were bad before....)  And yes, there are many times that I close my blinds, strip off my shirt, and just wear the Compression Crap and the garmies.  No judgie.

So first I put on my compression garment.  They're like Spanx.  Which I kind of like.  Muffin top? Gone!  Back fat?  Gone!  Then I have to slip in this compression foam that is cut to my specific shape.  It goes from my cleavage tattoo between one deflated fake boob and a crater that used to be my other fake boob, under my armpit, where my fluid from surgery sits, and around to my scapula on the back.

Then I have to wrap myself with something akin to an Ace bandage, though I've been informed that this stuff is much better than an Ace bandage.  It's German-made, after all.  (I guess Germans make things well.)  I guess it stretches in a different/better way than an Ace bandage does.  So I wrap and wrap and wrap around my chest.  It secures the compression foam and provides even more compression.

And then we come to the piece de resistance - my compression sleeve.

Oh, how I hate that thing.

I can handle the spanx and the foam and the Superior German Bandaging.  But the sleeve?  Je le deteste.  I mean, wearing it and hanging out with my arm straight is alright.  But if I bend my arm for any reason - for example, I don't know....doing dishes.  Helping my kids with stuff.  Holding a phone to my ear.  Driving. - it crinkles in my elbow pit (I'm sure there's an official word for that place, but I don't know it and don't have the inclination to look it up) and hurts so badly.  It's all red right there when I take it off.

I have to wear this getup from when I wake up in the morning until I go to bed at night.  And then I get a wonderful, binding-free respite.

I mean, I guess I should be grateful that they even have this stuff and that I can even "push back" my lymphedema so that I don't have to have an arm that looks like it has been smitten with elephantiasis. And I am grateful.

It just hurts.  And I'm a whiner.

I swear I'm putting it on correctly.  I do it just like the lady at the special prosthetics place showed me.  Which is the same as what the instructions inside the box say.  Maybe it's just part of the biz, having a sore elbow pit.

I'm having a glorious vacation from my compression gear right now, because it's being washed.  I have to wash it in Dreft only.  Interesting, no?  Dreft smells so good.  (For those of you who haven't had babies, Dreft is this really mild laundry detergent.  It smells like babies.  I love it.)

I'm supposed to have two compression garments and two compression sleeves, one for washing and one for wearing.  Compression sleeves are $200, and I got mine through a local foundation that raises funds for these things.  They have to fill out more paperwork or some dang thing to enable me to get another.  And they were out of the compression garment I have at the place, so I just have to wait until they come in.  Those aren't expensive at all - about $20 each.

So yeah.  There's that.  My arm is still measuring the same - 2 cm larger than my right arm.  Which isn't bad at all.  We're trying to nip in the bud.

Reconstruction

I've been talking to several doctors and nurses, listening to podcasts, researching reputable websites, etc. about my reconstruction dilemma - trying a tissue expander again in a year vs. doing this DUIP flap thing.  My sister's a nurse anesthetist, and she obvi works with several surgeons.  She and this surgeon who specializes in breast reconstruction came out of surgery a couple of weeks ago, and she called me and asked if I wanted to speak to this guy.  (So cool that he took the time to speak to a complete stranger on the opposite side of the country!)  This dude only does breasts.  So I paid careful attention to his opinion.  And he knows my history - the tissue expander being rejected, etc.  He told me that he never, ever attempts tissue expansion after one has been rejected.  He says that the skin is as solid as a rock (Which is true, you guys.  It feels like a thin layer of skin over a 2X4 inside my chest.  It is really trippy.) and simply incapable of successfully stretching ever again.  He said that DUIP flaps, or "Tram Flaps," as they call them, are not as invasive, complicated, or scary as they seem.  The abdominal wall isn't messed with.  More and more women are doing it and are very pleased with the result.

I also talked with my plastic surgeon when he took my stitches out (So grateful I don't have feeling in that area.  I didn't feel a thing.).  I told him of my misgivings about Tram Flaps, and he affirmed that he hardly ever has success doing tissue expansion after one has been rejected.  He told me he has two women right now that had tissue expansion rejection.  (I'm trying to figure out why nobody told me how common this is.  I would have never gone down this road.  Not one person told me that this could possibly happen.  Grrr.)  One woman is doing great.  The other woman has had her skin further constrict, and now her new implant is up by her neck.

*Shudder.*

Do I really want to do something that has such a huge rate of failure??  With the Tram Flap, my surgeon also said that, after you get out of the hospital, it's a two-week recovery.  He reassured me that, after two weeks, I'd be up and about and yelling at my kids and doing all my normal stuff.  That made me feel better.  I do NOT want to repeat my recovery experience that I had with my hysterectomy.  Serious PTSD from that.  I still cannot watch HGTV, because that's what I watched a lot of while I lay in my bed for WEEKS.  I still can't listen to certain songs that came out on the radio during that time.  I'm not kidding.  I just...can't go through that again.  I'd rather be completely boobless.  Two caverns, one on either side.

Which is a thought.  Because obviously, this surgery might plunge me back into lymphedema.  Assuming I ever push the current lymphedema back.  Which was caused by the emergency surgery to remove my left tissue expander.  That is something to consider.  Are boobs worth being in lymphedema for??

Sorry for all of my pontificating.  It's obviously been on my mind a lot.  I needed to just write it all out, I think.  I'm definitely going to do that consultation appointment with the doctor in Portland, at least to hear more about it, to make sure that I'm a good candidate, etc.

If I'm not a good candidate - if I don't have enough skin and fat for it (I assure you that I do), then I might just have them take out my right tissue expander and call it good.  I just don't know that having boobs is really worth all of this bother.

Pounding the Pavement

Soooo, I've been applying for dance teaching jobs!  Woot!  I had kind of a tryout interview on Saturday - this is normal when applying for dance teaching jobs.  They need to see that you can teach. It was with a studio whose owner was a professional ballerina. She runs a very prestigious studio and turns out really, really good dancers.  I'm not sure if she liked me or not, but the kids loved me and their parents loved me, which made me feel nice.  I haven't heard back from her yet.

I had a regular interview with another studio in town that offers lots of kinds of dance lessons.  The owner was very jovial and fun.  I could see myself working there, for sure.  Another studio about half an hour away has an owner that wants me to contact her at the end of June, after her spring show is over.

So, we'll see.  I figure that, if I'm meant to teach somewhere, it will all fall into place.  We just have to see where I'm supposed to be.

Tuesday, April 7, 2015

A Hairy Situation

Here is Micah with some dyed Easter eggs - we tried this shaving cream/marble technique, and it didn't work out as well as we had hoped.

Oh this little man.  How he struggles.  I'm not entirely sure what the problem is with him; it may be more than one thing.  All I know is that he is seriously only happy maybe 1% of his life.  Anxiety seems to be an issue.  He's extremely volatile, as well, often hurting his siblings.  He pushed Sadie down last week, and she sprained her wrist trying to catch herself.  It hurt her so badly that her doctor thought it might be fractured; we got it x-rayed, and it turns out to just be a really bad sprain.  If he can't find one of his toys, he goes immediately to the shrieking/crying/running around frantically stage.  I often have to talk him down from that stage, reminding him to look here or look there for said toy.  He is verbally volatile, too.  If something isn't working out quite right for him, he says things like, "I hate this life!  I hate this world!  I want to move back to Idaho!!"  He is often verbally abusive to his siblings, as well.

And yes, no doubt what our family has gone through in the past year has affected him.  A big move, away from everything he's ever known.  A mom who has been sick for a really long time.  A job change for daddy.  But, quite honestly, he was like this before.  I feel like he's been angry at the world from the first second he was born.

And don't get me wrong - Micah has a lot of first-rate qualities.  Sometimes he can be so sweet to Gage.  He cares about getting his homework done and doing a good job on it.  He loves snuggling with Ben and me.  He's sensitive and sweet.  He's very artistic.

I just get a sense that the Happy Micah is trapped inside of Uncontrollably Angry Micah.  And I know that feeling from first-hand experience.  There have been a few times when I felt trapped within my clinical depression.  It's almost an out-of-body experience.  You're watching yourself be a total monster to everyone around you, and you're yelling at yourself, "Dude, what is your problem?  Just simma down-a!!"  But you can't.

He always feels badly when he's done something to hurt someone physically or emotionally.  He always says sorry and cries real tears of contrition.  It's not an act.  I know whether something is an act.  I get the sense that he acts impulsively, something bad happens, and he is shocked at what he's done, and deeply sorry.  My mommy instincts tell me that there is something deep happening within him, whether it's depression, anxiety, bi-polar...  And yes, those are big words to be throwing around for a six-year-old boy.  But I've been around the block.  I have close relationships with many people who struggle with these things, and in all honesty, I think there's something not working out with the chemicals in his brain.

We do the Love and Logic thing with our kids - we explore what didn't work about the way Micah responded to something, he and I.  "Did that reaction work out very well for you?"  "No..."  "Can you think of something differently you could have done instead?"  And I make him think of a solution.  I don't feed him solutions.  And then we resolve to try this new reaction to plan for the next time a situation arises.

And it's just not sticking.  I know he's sorry for the things he does.  I know he wants to change.  He just can't seem to get control of this rage that he has.  Which is why I think he might have a chemical thing going on in his brain.

I'm not saying that I'm ready to jump headfirst into medication for him or anything.  I mean, he's six (almost seven).  He's teeny.  But I am ready to bring in professionals to figure out what this beast is that we're dealing with.  We need to know what it is - anxiety?  Depression?  So that we can deal with it appropriately.  And then he needs, at the very least, a children's counselor to help him come up with tools he can have to deal with the extremely hard life of a six-year-old.  Yes, there was some sarcasm in that sentence.  Oh no!  You can't find your Little Pony!  Yes, that is cause for you to scream like someone ripped your spleen out!!

This is what happens to me sometimes; I get snarky about problems that I perceive to be small.  Like, if I see a commercial on TV that's like, "Are you sick of your hair not having enough volume?  Try this expensive shampoo to help you with this really huge problem!"  Or "Oh no!  You are starting to get wrinkles!  [Um, because you're getting older.  It happens to EVERYONE.]  Use this product to help you with this really huge problem!"  I get a little pissy.  Sometimes I even talk to the TV and say, "Oh noooo.  How hard for you, lady.  Hair that doesn't have bounce?  That is a HUGE problem. You must cry buckets of tears daily."

It's bad of me.  Everybody's problems are real to them.  I don't win the contest for hardness of problems.  The things I've gone through should make me more empathetic, not less.  I'm working on it.

And in Micah's six-year-old brain, the loss of his Little Pony is a really, really big deal.  I need to honor his feelings more.

I also wonder if he has some kind of sensory perception issue.  He won't wear jeans; only "soft pants."  Lace-up tennis shoes are "too tight."  Slip-on shoes only.  Buttons on shirts bother him.  We've talked on here about how he feels about getting his fingernails trimmed.  It's a torture-fest.  In fact, he has actually started biting his nails on purpose to avoid getting them trimmed.  I kid you not.

And  haircuts?  Oh mama.  He really struggles.  REALLY struggles.  I've tried to honor his feelings, just kind of trimming at the neckline and earline with scissors, but he starts to look a bit like a hobbit when his hair is long.  Last night, Ben decided it was time for a haircut.  It sounded like Micah was being murdered in our bathroom.  He was screaming, crying, yelling disrespectful things at Ben while he worked.  His haircut looks fantastic, but Mike won't let me take a picture of it.  He cried himself to sleep last night.  He woke up crying about it and wearing blankets and towels on his head.  He says he looks bald, which is untrue.  I had to walk him to the school counselor's office this morning, because he was so mortified about his haircut and was screaming and crying about the kids in his class making fun of him.

I mean, it's just a haircut.  I tried comforting him, talking about how, if people make fun of him, they aren't his true friends.  That what's inside is more important than what's on the outside.  I reminded him that many little boys have the same haircut as him.  But he would not be comforted.

And I'm exhausted.

So I called this clinic that can kind of assess what his issues are and then can at the very least do some outpatient counseling.

I just want him to be happy.

Okay, cancer update:

1.  I get my stitches from lefty removed on Thursday.  At that time, I'm going to have my plastic surgeon deflate righty as much as we can, so that both sides "match" for the next year.

2.  The surgery to remove the tissue expander on the left, which was being attacked by my body, created some fluid just under my armpit.  Since I no longer have lymph nodes in that armpit, according to my occupational therapist, I've developed lymphedema.  My left arm is thicker in measurement than my right arm.  So we have to do some things to try to kind of put my lymphedema back into "remission," so to speak.  I have to wear a compression garment (like spanx) and a compression sleeve.  I'm waiting to get those until my stitches are out.  My OT taught me some massage techniques to teach the body to drain fluid down into the lymph nodes in my groin or into my other armpit, rather than pooling in my left armpit.  I've been really good about doing the massages every morning and night.  I personally think that the fluid that is sitting under my armpit right now is starting to shrink a little.  We'll see.

3.  I had to go to the hospital on Friday night.  I caught some bug or had some kind of reaction to some kind of food which made me have violent, ah, dysentery.    Wink.  It was so bad that I quickly got dehydrated and had to have fluids via IV.  I also felt like I had a UTI - so BADLY!  But nope, it wasn't.  It's just leftover damage from chemo in my bladder.  Sigh.  For a couple of days, I had forgotten to take this new overactive bladder medication I was prescribed, so it was my own fault I felt so crummy.  I curled up on the gurney (Finding Joy in the Gurney!) and watched Back to the Future 1 and 2 on TV, which was pleasant, except for the UTI feeling and dysentery feeling, both of which were addressed with over-the-counter medications and seemed to be resolved.  I was soooo scared that I had C-Diff again; luckily, I didn't.

4.  I feel really great the past few days.   I even hiked my Butte yesterday!  ("Whoa, that's a pretty big butt...")  I joined a post-cancer exercise group that meets once per week, and I also joined a post-cancer hiking group that goes on a hike once per month.  It makes me excited and happy.  Once I get these stitches out and things seem to be on the up-and-up, it's time to apply for ballet teaching jobs and get certified in teaching barre.  Yeeee!  I can't wait.

Friday, April 3, 2015

I am a weird unicorn.

Want to see how awesome I look?  Well, okay.

I realize now that I should be wearing a different color so you can truly appreciate it, but if you look closely, you'll see.  I have an enormous size C boob on the right, and on the left, nada.  It's a fun look.

I saw my plastic surgeon last Tuesday for him to check my stitches and all that, and I do not know why it didn't occur to me to have him deflate my right side.  They can take out or put in fluid whenever they want, and it doesn't hurt at all.  I just had other questions written down and other things on my mind.  I do see him Tuesday again to get my stitches out, so I'll have him deflate me quite a bit then.  So that I'm "matching."  A little.

It's been a really emotional week and a half or so.  More than I thought it would be.  I guess I just...had this plan.  This was one of the last hurdles.  And then it got all messed up.  For eight months, the story was, "First, mastectomy.  Then chemo.  Then radiation.  Then boobs.  Then herceptin.  Then done."  And like I told you before, I've been in limbo for so long.  I'm so sick of feeling crappy.  I'm so sick of being homebound so much.  Bedbound.  It's just not my thing.  I'm a get-outside girl.  Big time.  A go-do-fun-stuff girl.  I think a lot of the mental battle of the past 8 months has been trying not to be depressed by being stuck indoors so much, and limited in my physical activities.

And yeah, you can see from the picture that I've lost some weight.  When I'm in pain, I don't have an appetite.  I really do try to pay attention and eat three meals a day, though.  I just...don't eat as much.  Because of the no appetite thing. And I try to eat healthy.  Mainly.  Wink.  I don't know.  I didn't set out to lose weight, and I don't know how much I've lost, but it's kind of a happy consequence of feeling gross.

Ya know, the hospital where I got my radiation is so fun, because they give you free acupuncture, raiki healing, and massage clear until two months after radiation is finished.  I love all three of them so. dang. much.  It's just time to quiet my mind and be pampered.  It's fantastic.  So I went in on Tuesday, and the acupuncturist is like, "So, do you have any pain?  What can I help you with?"  And I just started bawling.  I explained that I wasn't in any more physical pain, but in some emotional pain.  And I told her my feelings about this tissue expander having been rejected and everything.  So she nodded and had me lie down on the gurney thing (my mom and I always joke about me finding "Joy in the Gurney" - makes me laugh every time), and she did some of the usual places with her little needle thingeys - near my toes, by my ankles, by my knees, my wrists, etc. etc.  But this time, she put needles right on my calf muscles.  Do our calf muscles control our emotions?  Who knows.  Whatever.  But dang, those needles really hurt.  Usually they really don't hurt.  But I'm telling you what, after an hour of gurney time, I felt like a new woman.  I don't know. It's interesting.  I like eastern medicine.  And need western medicine. ;)

Okay, so I've misinformed you, unintentionally.  I clarified things with the plastic surgeon on Tuesday.  I blame the pain meds.  Which I've been off of for several days.  Woot!

So here are my two options:

1.  Wait a year.  At the very least.  Then try a tissue expander in my left side again.  There is some risk that my body will reject it again.  After it's expanded, we do a smaller surgery - deflate the expanders on both sides, slide them out via a small slit, slide in the fakeys, sew up the slit.  Badda-bing, badda boom.  There is also a risk with fakeys - sometimes you have to get them replaced.  My sister, though, who's a nurse anesthetist, says they're so great nowadays that I may never, ever have to get them replaced.  I like the sound of that.

2.  As early as July, I can do this tummy tuck thing.  It's called a DIUP Flap.  And no, the skin doesn't cover fakies like a blanket.  They actually harvest your skin and your fat AND your blood vessels.  And they put them on your chest and make boobs out of it.  Isn't that crazy?? And it's intense.  I mean, not only are you doing a tummy tuck, (And those are way more intense than they sound.  They have to, like, cut your belly button out before everything, and then make a new hole in the skin they pull down and sew and put the belly button back.  It's seriously really gross.) but they're doing microvascular surgery.  Like, using microscopes to sew your blood vessels into your chest and stuff.  I mean, it's insane.

I could do the flap thing in three months.  Or a year.  Or two.  Or whatever.  Recovery time is pretty long.  Even the hospital stay itself is SEVEN DAYS.  That is intense.  I've heard glowing reports from the flap, but I've heard that it's a hard recovery.  And after my hysterectomy two years ago, from which I still have major PTSD, I'm not anxious to do something intense again.  It's a one to two month recovery, but women are pleased afterwards.  There are risks to this one, as well.  Your body could still reject your tummy stuff, even though it's your own body and everything.

As I've thought about it and prayed about it and researched it, I don't know.  The DIUP thing makes me intensely uncomfortable.  I mean, I've been through hell this past year.  I just want to recover.  I want to be happy.  I want to have the most fun summer ever.  I am dying to get to teaching ballet.  I want to feel the sun on my face and live life and have vigor and feel good.

So I'm thinking I'll go boobless for a year, and then we'll try this tissue expander/fakies thing again.  Or maybe I'll wait two years!  Who knows?  At this point, I don't give a rat's arse about having no boobs whatsoever.  I mean, eventually, sure.  I'd like to look like a woman again.  But my first priority right now is being happy and healthy again.  If people stare at my weird chestedness, I don't care.  I really, truly don't.  These are my battle wounds.  I'm actually almost proud of them.  Look at what I survived!!

So for now, I'm going to have him deflate my right boob down to maybe a really small size a or whatever.  We can always reinflate/restretch in a year.  Chances of my right side being rejected are very small.  It hasn't been radiated so badly. So we'll deflate it to the point that it looks alright and not like some weird sock hanging down.

And then I'll just be happy.

Being a determined type 3, I have already made a new plan.  I obviously want to teach ballet again.  As soon as possible.  But I can't be the type of teacher that teaches from 3 p.m. to 10 p.m. every day.  My kids need me more than that.  It's just how they are.  They struggle in lots of ways, and they need me.  Sometimes my hubber doesn't get home until 7 at night.  I'm not going to leave them alone that long.  It's just not a good idea.  They fight too much.  Popcorn gets spilled all over the floor.  Chocolate milk gets spilled on the walls.  (These are true examples I'm using here.)  Gage has occupational and speech therapy.  The kids need encouragement and help with their homework.  My number one job is mommy.  But I do have to get out of the house sometimes.  So I'm thinking I can teach a couple of classes a week.  At night, after homework is done and my husband is here.

But then!!  Gage will be a kindergartener, right?  I think I want to get certified to teach barre classes, which will be a cinch for me, since I danced for so long.  They have a couple of barre studios in town.  And I want to teach barre while Gage is in school!!  I've heard barre teachers make pretty good money.  And it sounds like a ton of fun.  I'd love to teach adults.

There's this program I'm starting next week where personal trainers help cancer victims work out during their recovery.  The hours are donated by the trainers and teachers.  I wouldn't mind teaching ballet for free once a week for people who have gone through what I've gone through.  If they want.  Very unintense, of course.

So this is my new plan.  To be happy.  To embrace life.  To go explore all of these lakes and hills around here with my kids.  To get a garden plot at this free community garden.  Grow veggies with my kiddos.  Feel the sun on our very well sunscreened, covered, and  hatted bodies. :)  Let Heavenly Father heal me.  Dance again.  That feels right for me.

Saturday, March 28, 2015

Typing While on Pain Meds - Always an Adventure!

Oh goodness.  I just typed an e-mail while on pain meds.  Actually, "typed" is a strong word to use there.  More like, "hit wrong keys and did a ton of backspacing."  Haha!  So, um, we'll see how this goes.

I'm typing this while my whole family is at this really fantastic-sounding children's museum in town. Let us all take a moment of silence for Kar missing out on something fun.

Thank you.  It's been a lifelong problem for me - I HATE missing out on fun stuff.  Which means that I usually push myself to do things that my body isn't ready for yet.  Sigh.  I'm trying to be good today, though.  Rest up.

The surgery went well, and everything seems to be healing up okay.  I have this cool stuff called Silvadene, which has silver in it, which is supposed to help you heal faster!  Cool, right?  I feel so luxurious and decadent, putting ointment made of silver on my wound.

The wound itself isn't terribly painful.  It's the stupid draining tube that hurts.  Man, I hate those things.  I shall always maintain that the worst part of baby delivery is the stupid IV, and the worst part of surgery is the draining tubes.

But I do have a funny story that I forgot to tell you about my draining tubes way back last August.  If you were with me then, you might recall that the bulbs that the tubes led to were unaffectionately nicknamed the Blood Grenades, right?  Because they seriously look like grenades.  Filled with blood.

So I had just had my double mastectomy, and my family all went to the Paul McCartney concert (one of the best experiences of my LIFE).  It's important to note here that I was on pain medication at this time.  So we're going through these checkpoint things so they can make sure you're not bringing contraband or firearms or whatever into the Delta Center, and everyone had to empty their pockets.  I wanted to empty mine, but they had blood grenades in them.  I think any normal person not under the influence of pain meds would have just walked through and not talked about it.

But, because I was on pain meds, in my drugged up stupor, I said, "Hey, what about these grenades??"

And the guards are like, "Wait, WHAT?"

And I pulled them out of my pockets.  "These blood grenades.  I can't unplug them and put them in your little trays..."

I think it was my mom who came to my rescue, saying something to the effect of, "Sorry, guys.  She calls them blood grenades.  She just had surgery.  And she's on pain pills."  They waved us past without further incident.

Haha!  Good times.  Good times.

So yeah, the blood grenade hurts quite a bit, but not the stitched up wound itself.  I still don't have a ton of feeling in my left...side. There's no breast there.  Just a concave indented thing.  I'm grateful that I don't have pain right there.  And hopefully my decadent silver ointment will do the trick to heal it.

From the sounds of it, the tissue expander option for my left side has sailed.  My skin is sufficiently ruined to make that impossible now.  From what my plastic surgeon says, my only option now is to have some kind of tummy tuck type of procedure.  They'll harvest skin from my tummy to make a new breast for my permanent implant.  And they may do the same thing on both sides, for both breasts.  They wonder if doing two different procedures for two different breasts may cause them to behave differently from each other.  So the easy tissue expander option might be out the door for the right side, too.  I'm getting prior authorizations and referrals and all that crap right now to see this lady who does this tummy tuck thing.  I guess she lives in Portland.  I don't know when the surgery will be - no idea.  I'll tell you when I know.

I guess my overall feeling right now is that I'm bummed.  I'm bummed that things didn't work out.  I'm bummed that I have to do more of a major surgery than I had planned on.  I mean, I guess I could just go without a boob there the rest of my life.  I just... want to look halfway normal.  I want to feel good. I want to get started teaching ballet.  In many ways, I've felt like my life has been on "pause" for so, so long.  It's just getting old.  I was just starting to feel good enough to jog, but I've been out of commission since my skin started really burning and since I lost my left boob.  Again.  Sigh.

I just have to keep chanting my mantra to myself.  At least I'm not dead.  At least I'm not dead.  Maybe I should get a less dark mantra.  One that's fun to chant.  Can I tell you the cutest chant my friend Rach used to do with her kids to help them clean up?  I seriously love it:

Pick it up!
Decide what it is!
Decide where it goes!
Put it away!

And then her kids added a line:  "It's not that hard!"

I need something like this.  Maybe something along the lines of:

Get on your knees!
Pray for help!
Get on your feet!
Get to work!
It's not that hard!

I'm up for suggestions.  Help me make a happiness chant, friends.

Monday, March 23, 2015

As of tomorrow, you may call me One-Eyed Willie.


Although it would be an eye without a pupil, if we're speaking metaphorically here.  (Yes, I'm talking about my boobs.)  Maybe One-Eyeballed Willie.  No, wait - Wilhelmina.  One-Eyeballed Wilhelmina.  Let's at least find some. damn. way. to keep me feminine, here...

Let's start from the beginning.  "You told me to go back to the beginning...so I have.  This is where I am, this is where I will stay.  I will NAHBEMOVED!!"  What moooovie?

Kay, so.  I had radiation for six and a half weeks.  All but the last four days were kind of in a big square going from between the boobs and over to my side, and then from just under my boob to my clavicle or so.  And you guys know this.  When my skin started burning, I had a really awesome wound in my armpit.  I'm seriously extremely pleased to report that the armpit has healed up really nicely!  Gorgeous, new, pink skin up in there.  Thank goodness.

The last four days of radiation were called the "bump up" days.  They only radiated along my scar.  Like if there was a big, fat caterpillar on my scar, that's the area that was hit.  And I could tell that the length of time that they hit it was longer.  It buzzed there FOREVER.  I was really glad that I didn't have to breathe shallowly for that part, though.  And I figured that, if I had some blistering and open-wound action in that area, it wouldn't matter that much, because I don't have a ton of feeling on that skin.

As predicted, the area got very red and started blistering.  I was doing the proper burn wound care and all that.  A week ago or so, I was pushing Gage along the street on his bike (he can't figure out how to continuously pedal, and in my overzealousness, I pushed it too hard - kind of my MO), and I pulled my left pec.  Oh the PAIN!!  I don't know what the deal was, but the pec, plus the radiated, messed up flesh in there - the combo was horrible.  I had to stay in bed for two days straight.  Eventually, the pec healed, and I was back to my normal wound care stuff.

I've gone back to my radiologist to have her look at my skin a couple of times, and as recently as Friday, I was doing well.

That all changed today.  I went to change my dressing, and, um, well...if my scar is the zipped up ziplock bag, it had unzipped.  It was so gross, you guys.  SO GROSS!!!!

And I could see my tissue expander right there.  Through the huge gaping hole on my boob.

Sigh.

Again, the pain wasn't horrid, because my nerve endings are pretty much shot right there.  So at least there's that.  I went to my radiologist's office, and she urged me to see my plastic surgeon as soon as possible.  So I got in to see him, and  he told me that sometimes, after you've been radiated, your body is trying heal up the skin and all that jazz, and that's when it finally dawns on your body that you have this foreign tissue expander in.  And it wants to kick that expander out.

So here's the game plan - I have surgery in the morning.  They'll take the tissue expander completely out and sew me shut.  We can't put another one in.  I will be concave on my left.  In a few months, they will have to give me a tummy tuck - yes, you read that right - to harvest skin from my tummy and make essentially a big old patch to put on top of my silicone implant on my left side.  The right side will go as originally planned - deflate my right side tissue expander, make a little cut, slide it out, slide the silicone one in, sew it up.  Badda bing, badda boom.  I wish it could be that simple for Leftie, but that's life, right?

So until then, I will have one fake, hard-as-a-rock boob on the right, and I will be concave on the left.  Yeah.  But I'm not mad about it.  It's just temporary.  I'm soooo past the point of caring about how I look.  I look like Frankenstein.  I've made peace with it.

And I get a tummy tuck out of this!!!!  Once again, let's review.  Would any of you have guessed that Your Dear Kar would end up getting fake boobs?  And a tummy tuck?  I wouldn't have pegged me for that.  Not in a billion years.  It's funny, where life takes you.

This is just going to be a one-day surgical center kind of a deal.  I've got good pain meds, and I'm on antibiotics, and my adorable church ladies are poised and ready to help with food and child care.  They're awesome.  Hopefully this will just be a little blip in the journey.

Wish me luck tomorrow.

Wednesday, March 11, 2015

Gage's Very Important Minutae

Oh my goodness, my little Gagey is so busy.  So, so busy.  Which is good.  I'd be concerned if he just sat there, staring off into space. 

He doesn't play with toys, per se.  He plays with household objects that he turns into toys.  Anything in the house is his, in his view.  Chopsticks?  Those are Gage's.  Scotch tape?  Solely Gage's.  Mom's decorative cardmaking buttons.  (Grrrr.)  Spoons.  Butter knives.  My armpit ice packs.

And you know, I'm glad that he is using objects in imaginative ways.  I am.  I just wish he'd not be up in my grill about it all day.  I was extremely, extremely ill yesterday (stomach bug of some sort) and totally out of commission on the couch.  Gage didn't have school, so of course, he got to work on his Very Important Gage Projects all day.  My sweet friend Janet had brought some playdoh over for the kids to play with, and Gage wanted me to help him make snowmen out of it.  We couldn't get the balls to stick together, so I grabbed the toothpick box and used them to skewer the snowmen.  Then I lay back down. 

So then, he wanted me to make birthday candles - me making the small flame and then skewering it to the top of a toothpick.  I made like a hundred "candles," making a hundred bathroom breaks in between.  Then it was paper airplanes.  He took page after page out of our paper binder (supposed to be for homework) and asked me to make paper airplane after paper airplane.  Eventually I had to put the paper binder on top of the fridge (that's where we put things so they're out of Gage's reach.  We have a whole buttload of crap on top of our fridge).  Then I lay back down. 

I was just dying.  I was feeling so, so poorly that I called Ben and begged him to come home so I could just sleep.  He did, and I was so glad.  So then Gage had someone else to help him with his Very Important Projects.

Gage has a pretty persistent cough this morning, so I kept him home from school.  As I've been preparing for our Relief Society Inservice meeting that's coming up, he has kept me on my toes.  He asked me to print a picture of a dinosaur.  I did.  He asked me to print fifty other things.  I said no.  Sorry; ink is EXPENSIVE.  Then he wanted me to rip a rectangle surrounding the dinosaur.  Then he got into my buttons again.  Then he got a bowl and filled it with water, and then put the buttons in the water.  Then he decided that he wanted the buttoney water in a baggie.  He specifically wanted me to use a spoon to put the buttoney water in said baggie:
Then the baggie started leaking.  So he emptied a toy bin and had me dump the contents of the baggie into the bin.  Then he got a large freezer ziplock bag.  Then he had me pour the buttoney water into that bag.  Then he asked me to rip some tape pieces from the scotch tape roll.  Then the tape pieces inevitably got stuck onto themselves.  Then I had to unstick the pieces from themselves.  Then he taped the picture of the dinosaur onto his toy bin.  Then I had to cut out the shape of an airplane out of a piece of paper for him.  And then another one.

It goes on and on.  Ay, carumba.  He's killin' me, Smalls!

Cancer stuff:

1.  Ben's skin scan went well. They removed two small moles that could have, in time, become cancerous.  And a skin scan?  It's like four people, searching every inch of Ben's body for moles.  Using these light/magnifying glass thingeys.  While he stands there, in a loincloth.  *Snicker*  Sorry, it's just a funny visual for me.  Poor guy.  But he's good!  He has to go in every three months to get scanned.  In a loincloth.  Hahaha!

2.  Today is my last radiation! I have to have the armpit radiated one last time.  It looks way worse then it did when it had a wound the shape of Louisiana in it.  I'm not going to even take a picture of what it looks like now.  It is seriously so gross.  And let's say that it's no longer Louisiana.  It's more like the Gulf of Mexico.  Yesterday, the doc was like, "Maybe we should wait a week for your armpit to recover..." but I was like, "No.  We're finishing this.  I can do it.  Let's just get the damn thing done."  The radiation to just the scar area hasn't had a bad effect.  Just red, like a sunburn.  I don't have any feeling there, so I'm doing good there.  My armpit - not so good. :(

3.  I was supposed to have my third of 17 Herceptin treatments this morning, but my little Sickie caused me to postpone it.

4.  My bladder still gives me a lot of problems.  My urologist is trying a different medication to help with the constant urgency feelings.  I don't think it's really working.  I get frustrated.  And I use a lot of that AZO stuff that helps with the urgency and discomfort associated with UTI's.  It makes you pee orange.  I LOVE that stuff.

5.  I find myself feeling really, really jealous of healthy people.  People who feel good enough to run, or play with their kids.  Or dance.  Sometimes I wonder if I'll ever feel good again.  The limitations of my body really bum me out. 

6.  I go in next week to get my right boob filled back up again.  And then, in three months, the plastic surgeon will examine my skin and make sure that I've healed sufficiently enough to get my "real" boobs put in.

But let's revisit #2.  Can you believe that today is my last radiation???  This is a cause of celebration, friends!  A huge milestone behind me.

Guess who is being over-ambitious and wanting to run a half-marathon with my friend this summer?  Me, that's 'oo.  I mean, if I feel good enough to train for it and everything.  She will attest to the fact that my health has made me pretty flaky in the running department of my life.  But wouldn't that be cool if I could do that??  It would be close to the one-year mark of my diagnosis, and it would feel so EMPOWERING to do that.  Kind of like, "That's right, Cancer.  I kicked your arse.  Here I am, a year later, alive.  And running.  Even though it's 3.7 mph running.  Most people can walk that fast.  But I digress.  I kicked your ARSE!!!"

Okay, I guess I get to go pop some popcorn for Gage.  Which he will probably use as a toy in some way.
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