Waiting for Savasana

I am mostly ok.

I had my “chemo teach” on Tuesday.  It was very informative and also scary.  I was so nervous sitting there with the nurse that I was worried I might barf on her, and I haven’t even begun treatment.

I did let her know that I am a puker.  It’s true.  It does not take much to make me toss my cookies.

My husband was there too.  He is very supportive but still, it is tough.

Before they even do the chemo, i get an hour of infusing fun stuff like steroids and anti nausea medication.  Then the tough stuff happens.

Adriamycin is not given through I.V. infusion.  Did you know this?  I didn’t.  Apparently, it is a shot directly into my port.  That takes about thirty minutes because they go slow and draw blood every few minutes to make sure the port is working.  Because if the port isn’t working and the drug gets into the tissues, that could be bad.  Then I get the Cytoxan infusion style.

The nurse took us through the infusion room at the end.  My husband walked through and saw people chilling out seeming to enjoy themselves.  He was feeling good about it and then he turned around me and saw me…crying.

I am so scared of chemo.

But I will get through it.  I’ve said it to my other friends, five year olds get through chemo.  Heck, there are infants who get through chemo.  I can not complain.

Wednesday morning, I got my hair cut…again.  Yes again.  my oncologist told me to cut it short.  Because it makes the transition to being bald easier.  So now I have a pixie cut.  It would be cute were it not for my chubby face.  The hair cut will make things easier because I do not love it and I truly did love my long hair.

Thursday, I had my port placed.  Another strange experience.  The nurse had a hard time finding a vein to get an i.v. started.  “I can see why you are getting a port.” he told me.

My arm is still kind of bruised from that lovely experience.

So they took me to the operating room and put me on the table and I was ok.  They made me look to the left and they washed off my right clavicle  area.  Then they draped this big sheet thing over me that had a hole in it only at the site where the port was going in.  They covered my face with the sheet and then made a little tent but essentially I was transformed into a clavicle.

Then it took awhile for the doctor to get there and everyone in the OR was kind of standing around talking and joking and ignoring the woman under the sheet aka me.  It would have been disturbing if my ego was bigger but I just thought it was interesting.  It’s like that drape of sheet made me a nonperson in that room.  I mean I was fully awake but had this sheet over me so it was like I didn’t exist.  When the nurse finally checked on me I smiled and said “Peek-a-boo.”  I think this threw her a little.

Eventually the doctor showed up and introduced himself to me.  They started some sleepy medicine but he also gave me all these shots in the clavicle too that I totally felt!  Ow!  And then I fell asleep for a little and then I woke up and it was over.

Back in recovery, they gave me a turkey sandwich, made me walk around and then sent me home.  I was fine as can be and then I got teary in the car because I wanted to go to Bed Bath and Beyond (long story) and my husband wasn’t going to take me and then he took me.

And then we got home and I had another mini-meltdown because I was hungry and I wanted pasta right then and I got all teary about it.

I think it was the sleepy medicine wearing off.  I hope cancer doesn’t turn me into a diva. Maybe it’s too late.

I felt better later that night and watched the finale of The Office with my love.

The next day was my son’s birthday.  I woke up with a literal pain in my neck from that port.  Felt sore all day but I think my son had a good time and that is what matters.

My neck still hurts today but it is manageable.  Funny thing is, I am noticing that the mastectomy healing has really improved.  My arm feels much better.  I am so relieved.

My first chemo is scheduled for Tuesday, May 28.  The day after Memorial Day.  I plotted it all out on the calendar and it looks like my last Taxol treatment will be the day after Labor Day.  So it looks like my summer is going to be pretty full.  If you are reading this and you know me, please don’t forget about me or my boys this summer.  We are really going to need a lot of help to get through this.  We have family helping but we always need our friends.

As always, thanks for following along as I go through this.

I defriended someone this week on facebook and in real life.  She posted something after the Angelina Jolie reveal about how cancer can just be avoided with diet.

And I call bullshit.

Yes I do.

You mean to tell me that after a person takes a test that says they have an 87% chance of getting breast cancer in their lifetime that your advice is to ignore that significant and scientifically proven risk and simply change everything by eating better?!  Really?!

I will say it again, bullshit.

Is diet important?  Of course it is.  Of course it is.  I have always tried to be a good eater, especially in the last few years.  I understand that diet can improve many aspects of your life. Nobody understands that better than me.

But diet is only one piece to the puzzle and it is reckless and irresponsible for any person in the medical community, holistic or otherwise to advise people that they can beat the BRCA gene with their diet.

As you know, I learned earlier this month that I do not have BRCA mutations in my DNA.  However.  I do have a strong family history of cancer.  I only learned of this history six years ago but it is undeniable regardless.  Both of my biological parents have had cancer at young ages.  My biological father and one biological grandmother died of cancer before reaching the age of fifty.  I learned six years ago that genetically, the odds were against me.  If someone in my immediate family was going to get cancer, it would most likely be me.

And I changed my diet significantly in the last several years.  I started taking supplements, I started exercising more.  And I still got cancer.

And now let’s talk about what probably was the most significant factor for me developing cancer at a young age, my environment.  First, I grew up in the seventies in a small town not far from a major city and very close to a town full of steel mills.  My town was rumored to house at least one Superfund site at the time I was living there, maybe two. And I saw enough pollution.  I saw it with my own eyes. When I was fifteen, some friends took us to what was called The Abandoned Tire Factory, deep in this woodsy area.  It was just as I said it was, a big old abandoned building.  Kids played paintball there.  And next to it, in the middle of the woods was the biggest pit you’ve ever seen, filled to the brim with old tires, and people, those tires were on fire.  Now I couldn’t see the fire, all I saw was tens of thousands of old tires.  A HUGE pit of tires.  But I saw smoke.   A line of thick black smoke coming from the tires.  According to those in the know, the smoke came up perpetually, eternally, rain or shine, sleet or snow.

And our whole town was breathing it.

“That can’t be good.” I thought to myself.

My mom still lives in my hometown, a known hotbed of cancer.  A lot of people get kidney cancer in my hometown.  A disproportionate amount of people in fact.  Kidney cancer killed my band teacher, it killed our neighbor, it killed my dad and many, many of his friends.  It’s crazy how many people are dying of kidney cancer over there.  There are other cancers too but for some reason, kidney cancer is a big one in my home town.

So here’s the thing, my mom announced at her church that I had breast cancer and she asked people to pray for me and after church, she told me that at least five members of her congregation came to her and told her that their daughters some my age, some younger, are fighting breast cancer right now too, just like me.

“That can’t be good.” I thought to myself when she told me this.

It isn’t.

Because this cancer, that used to get the “old people”, now it’s coming for the young ones too.

But it’s not just Indiana.

Just for fun I looked up Superfund sites in the county I live in right now.  And in Santa Clara County, right now there are 23 active Superfund sites.  TWENTY-THREE.  No amount of good eating is going to change the fact that I live in a toxic waste dump of a county.  TWENTY-THREE STINKING SUPERFUND SITES just in my county!!!

So yeah, go ahead.  Go ahead and tell me I caused my own cancer because I ate McDonald’s or drank diet soda.  I hope it makes you feel superior when you are eating, living and breathing on a Superfund site full of toxic crap and calling it home.

I was born with a bad  genetic set up I didn’t know about until I was 34 years old.  I grew up next to toxic waste sites surrounded by people who smoked in the home (one of my earliest memories is playing Go Fish with my grandma while she smoked her filter-less Camels).  I went to college in a town infamous for large amount of PCB’s in the air and water (Google Superfund sites in Bloomington, Indiana…YIKES).  I lived in a large city after college and then I spent my last thirteen years in the Silicon Valley or what I now lovingly refer to as toxic town.

But if you want to think that all this cancer that is getting everybody an be prevented with an organic diet and supplements…well good luck with that.

I am glad you feel superior to the likes of me and Angelina Jolie.  Sheesh, the woman just wants to give herself a chance to be there for her hot man and their many children.  But according to some, she should have ignored her high risk and her environment (16 Superfund sites in Los Angeles County! WOOT!) and just changed her diet.

Whatever, that is just bullshit.

Angelina Jolie wrote this beautiful piece that was published yesterday about her decision to have a double mastectomy with reconstruction.  She currently does not have breast cancer but learned that she, like her mother  who died several years ago from ovarian cancer, has a genetic mutation on the BRCA1 strand that predicts her chances of breast and ovarian cancer at extremely high risk.

I liked her piece and I respect her decision.  I can not imagine it was an easy one, especially for someone who lives in the spotlight and has a successful career, in part, because for her gorgeous appearance.

Not don’t get me wrong, Angeline Jolie is not my favorite celebrity.  While I appreciate the good work she does around the world as a Unicef ambassador, I don’t appreciate or relate to her on many other levels.

Anyway, what I can not believe is the flack people are giving her in the comments section.  There seem to be a large faction of “fans” claiming Jolie had the mastectomy purely for publicity.  This is after she described her post surgery ordeal with the ubiquitous Tubes and Drains.

All I can say is, people, get real.

This is a woman who can generate publicity by smooching her brother, or wearing her lover’s blood in a necklace.  Heck, really, all she needs to do is stick her leg out like a moron and the whole world is talking about her.

Publicity?

No.

This stuff hurts, man!  It hurts like a mofo!  I’m almost 4 weeks out and it still hurts a lot.

There is no way Angeline Jolie had a mastectomy for publicity.

She can chew gum and get publicity.

Some of the comments were about the reconstruction process.  Like it’ so easy.  People, it is anything but easy.  These tissue expanders, the ones Angelina got, the same one, I got, they are not comfortable.  Just imagine the doctor inserting a baggie like contraption into your pectoral muscles and then once a week inserting a needle,  filling that baggie with saline and ssttrrreettccchhhiinngg the muscle.

It’s awful.

And the edges of those expanders…ugh!  Beyond uncomfortable at times.  Sometimes they just dig into your chest.  Sometimes, the muscles rebel and it feels like and elephant is sitting on your chest.  Sometimes it feels like you are wearing a too tight bra made of some kind of heavy metal when you’re really just in your pajamas. It’s insane!

Angelina endured weeks of the crap, just like I am.  Seriously, I just looked down I can see my pectoral muscles contracting right now through my clothing.  This is not fun.

And then three months later, she had a second surgery to put an implant into the stretched out muscle.  And then…more tubes and drains!

Now I’m sure Angelina had a nurse to empty her tubes and drains although it is nice to imagine Brad doing it for her the way my dear hubby took care of mine.  And she has a staff to keep her children entertained while she recuperates.  But nurse or not, I can tell you a bilateral mastectomy with reconstruction is not a walk in the park.

I’m going to physical therapy once a week to strengthen and rehab my arm from this surgery.  I’m still taking pain killers.  I can’t drive!  I am at the mercy of my friends and family to get me through this.

I’m sure Angelina’s staff has got her back but still, that surgery is really freaking hard!

It is a big, big choice.

And people think she did it for publicity?  How silly.

Yes, I admit I am a little envious.  I wish I could do what Angelina did.  I wish I had some test that had told me I was at risk for this horrible disease because as you know, unlike Angelina, I still have some work to do before I can switch out my expanders for some new guns.

Chemo…radiation…more surgery… blah, enough about me!

If I could have saved myself the things I am going to endure this summer with a test that could predict an 87% risk a few years ago instead of where I am today as a Stage 3C cancer patient, heck yes, I would have taken that test years ago, had the surgery and counted myself fortunate.

One genius in the comments I read on CNN disagreed with Jolie’s decision saying that instead of a mastectomy, she should have chosen to get more frequent mammograms, after all, she certainly could afford them.  But what people seem to forget is that mammograms ARE full of radiation themselves.  They are not something anyone should be getting every six months, especially if they already know they have a high risk of developing breast cancer, duh!

I don’t know why the commenters annoyed me so much. I don’t really make it a habit to defend celebrities.  I guess it’s because I am living this thing and I am only three years older than Angelina Jolie.  My birthmother and I are both living this cancer nightmare despite the fact that I am BRCA negative.  If there had been a test that could have saved my life without involving the Hell I am in for, I would have taken it and gladly had the same procedure Angelina Jolie.

Angelina made a tough decision.  But she did it because she is a mama and she wants to be there for her kids.  Just like I do.  Just like we all do.

And while she has never been exactly my favorite celebrity, today she is my sister because we share a very surreal experience that is equal parts horrific and hope inducing.

The day of my surgery to remove the 5cm cancerous growth from my breast was the day my doctors and I could say Hell no, Cancer.  You’re not getting me today.  Not today.

Can you imagine being perfectly healthy and taking a test that predicts and 87% chance of you contracting breast cancer in your lifetime?

What would you do?

You know what I would do.

And Angelina?  All I can say is that is one strong lady.

I feel a lot like Westley right now from the golden oldie, “Princess Bride”. Yep, that’s me. Hanging out in the Pit of Despair.

I’m not really feeling despair though.  It’s just a metaphor.  The whole concept of my current recovery and the fact that I have to get better and heal before I get chemo and get knocked down all over again.
I’m trying to view chemo as a life giving and not life sucking machine though. Keeping it positive.

But that doesn’t always work.

I was out and about yesterday and had some fun. The weather is gorgeous. Had a nice day.
Today I had plans…it is Mother’s Day, you know. But I was a little sore so I ended up hanging out at home.

I was treated to a lovely gift basket with a wonderful assortment of gifts from my bunnies.
They did good.

Today, I am getting our summer schedule together. The original plan was NOT to sign the boys up for a lot of camps this summer. The plan was to go to the pool, hang out with friends and neighbors and chill for the summer. Now that plan is out the window.

I filled in some more camp slots and now will hopefully be able to time my treatment so that it synchs up with their camps.

I am being told that I will feel bad for a few days and then have a few good days and then get another treatment and feel bad and then feel a little better and then lather, rinse, repeat. But the truth is, we don’t know how bad I will feel or for how long OR how good I will feel (a lot, I hope). Whatever, I just know that if I was a kid whose mom had cancer, I would rather keep busy than mope around the house with said sick mom.
Regardless, I already know that a lot of t.v. will be watched this summer and a lot of video games will be played. I wonder if one can buy stock in Minecraft.

I am trying to rest, sorting through clothing and making room for my mom who is arriving this week for an indefinite stay. Yep. She bought a one-way ticket. I am so grateful that she is putting her life on hold to help care for us. It is asking a lot but the cool thing is that I didn’t have to ask. We need all the help we can get.

I’ve tried to keep busy today. I think about the significance of Mother’s Day and if I stop and think too much, I get weepy…but that only happened when I was alone. I am not really living in the Pit of Despair, just figuratively.

I think this is the most boring post I’ve ever written.

I am trying not to be scared. Just doing a lot of research. So the plan for now is that I will do four rounds of Adriamycin and Cytoxan, each round will be administered 2 weeks apart from the next. Then I will do four rounds of Taxol also administered every 2 weeks. This makes 16 weeks of chemo.
My understanding is to expect “flu like symptoms” also possible mouth sores. possible nausea, definite hair loss, bone pain, muscle aches and more!
I have spent a great deal of time researching the best ways to combat the nasty side effects. Somehow the research brings me comfort. I can not control what is happening but I can control my knowledge of it and I can advocate for myself. At this point, it is really all I have.
I read that if I view the chemo as what it is, medicine that can kill whatever remaining cancer is lurking around, than I may have a better time of it that if I look at chemo as a poison that is going to hurt me. That makes sense. Because really, chemo and radiation is all I’ve got at this point to assure there is no recurrence. It’s all about your attitude , right?
I found this to be true of the surgery. I mean really, in the grand scheme of things, losing my breasts was a no brainer. I wanted the cancer out. Period.
While I have had pain, it has been manageable.
I think it would have been a much harder surgery if I was concerned about my chest. This is not a judgement of those who ARE concerned about losing their breasts. I think I’m just lucky in that I have personally never been crazy about my own. I spent most of my life flat chested, barely on the A-team. I graduated to a B after having children but they never impressed me. I like the idea of rebuilding.
If I was actually attached to my breasts, I would have been devastated to lose them. Hey, I love my hair and my eyelashes and I am freaking out totally about losing them! For me, getting the cancer out trumped any feelings of loss I had for the girls. I just never liked them anyway. Good riddance.
For those who do not know, I opted to have skin sparring surgery with tissue expanders placed. My plastic surgeon originally placed them filled with 100cc’s of saline in them. He will be filling them weekly with more saline until they are a size we like.
100 cc’s of saline is not much to begin with. I emerged from surgery completely flat chested. I asked my husband if maybe the plastic surgeon forgot to put in the expanders! I felt like I was ten years old but that’s ok because I really liked being ten years old. It was fine.
I had my first fill last week. It was strange. The doctor inserted a needle on both sides with a syringe of 50 cc’s of saline on each side. Then he and his nurse counted to three and simultaneously filled both sides together.
Now I look like I’m 11.
I had another fill today of another 50 cc’s and now I am definitely looking 12.
My husband wondered why they had to be placed under the muscle and the reality is that without breast tissue, skin alone cannot support an implant.
I will have the tissue expanders for quite some time and go in for weekly fill that will stretch the muscle and then eventually I will have another surgery to trade out for implants.
How do the tissue expanders feel? Weird. Tight. Like I am wearing a bra all the time when I have not worn one since before surgery. Sometimes painful but, for me, not majorly painful. It’s kind of like getting your braces tightened when you’re a kid.
A lot of people have issues with the expanders. I can see why, they are not the most comfortable things. But they are kind of cool and I am grateful for them.
I am ok being flat chested. I spent most of my life flat chested until I had children. But it’s kind of cool, this process for getting the breasts that I always wanted but was always too modest to really complain about.
Beauty is pain sometimes.
Funny, my youngest has made some comments about my flat chestedness (which are quickly redirected or shut down) but he had a close, personal relationship with my breasts for the first two years of his life so I kind of understand his confusion.
This whole thing is surreal.
Thank you for following me on this very strange journey. Stay tuned for more fun posts about my upcoming, EKG, “Chemo Teach” and port placement. Sounds fun, no?
Yeah, I don’t think so either.

A friend let me know that I have not posted my final diagnosis.  Here it is:

Stage III C with a Grade 1 tumor

Don’t know what that means?  Well you can Google it.

I’m kidding, you don’t have to Google it.  I will tell you.

It’s bad.

The worst you can get before the REALLY bad one, Stage IV which is when it gets in your organs and/or bones.

As always, I am right there on the cusp.

From what I’ve read, the average person has about 40 lymph nodes in their armpit and breast area.  Well, they took 43 of mine from my right side and of those 43, 35 of them were positive for cancer.  35 positive lymph nodes.

The ultrasound I had on April 1st said my tumor was approximately 2 cm.  The MRI I had a couple of days later said because of my dense breast tissue it was difficult to determine the size but it could be anywhere from 2-5 cm.  Well April fools on me because the tumor was 5cm.

And that’s why I am at Stage III C.  Big tumor and lots of lymph nodes.

And another April Fool’s joke is that the tumor is still classified as a Grade 1.  Slow growing, well-differentiated.  A lazy dopey, slow growing tumor that somehow invaded 35 of my lymph nodes.

It doesn’t seem right does it?

Another friend asked me, how did it get this far?

I have no idea.  It was hiding.  No one found it.  I thought I noticed something when I was nursing my youngest but my doctor and I couldn’t find it later and back then I was 35.  Too young for a mammogram.   Was it there then?  I have no idea.  I kind of hope not but we. don’t. know. And I ran marathons (very slowly, but still!).  And I have a lot of energy and I feel really good.

I still feel really good despite the fact that I have Stage IIIC cancer.  I feel good.

It sucks.

This all is really bad BUT it is not as bad as Stage IV when they would have basically given up on me.  But it’s bad.

My oncologist is going to attack it with dense dose chemo.  Chemo every two weeks instead of every three.  Sound like fun?

No, it doesn’t sound like fun to me either.

And then when the chemo is over, I get radiation.  Five days a week for five weeks.

And then I get to take a drug.  Tamoxifen.  Doesn’t it sound evil just from the name?  Tamoxifen.  Ooooooh.

It’s an estrogen blocker that will starve whatever cancer is left after the chemo and the radiation.

And then there is always the chance that it will come back.  Yes, there is that chance.  Some people do all this and it still comes back and kills them.  It could kill me and that is a big thing to face.

Years ago, my husband shared this quote with me:
‘Death whispers into my ear, “live now, for I am coming”‘ ~ Virgil

This really struck me, even back when I first read it.  This is important. This is big. And I refuse to live in fear of death.  What’s the point?  It’s coming anyway.  It’s coming for all of us.  All of us.  Death is coming.

And I can’t help but feel like this is an opportunity.

So I am going to live.  I am going to go places and do things and I am going to laugh.  I am going to play.  I am going to run and do yoga and ride my bike. I am going to love on my family and my friends.  Heck, I might even crash your party.  I am going to walk my boys to school.  I am going to live.

Stage III C.  Yeah.  It’s daunting.  It’s bad.  I feel great right now but I am going to get my butt kicked for the next six months at least. Seriously, I am in for a serious butt kickin’ and it scares me a great deal.

And Death can keep whispering in my ear because Death gives good advice.

Live now.  Live now.