Waiting for Savasana


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So Far So Good

The day went allright.  I took an Ativan about 45 minutes before we left so I was pretty calm.

Oh Ativan, how I adore you.

It is truly a wonderdrug.  It can treat pain, nausea, anxiety and sleeplessness.

The only drawback is that it is addictive.  Bummer.

I took pictures,  they are on my phone.  I’m not sure how to get them onto this computer since it is my husband’s and my mom is staying in the room where I keep my computer and unfortunately, my mom is sick with the stomach bug the boys had.

I told her to wear a mask.  I’m just saying.

It probably also didn’t help that she was using the same bathroom as the boys.

I just brought her some tea and animal crackers and a big bottle of Pepto.  I hope she will soon be past the worst of it.

So back to my time in the infusion room: It went pretty well.  The nurse liked my port and said the surgeon did  good job with it.  It worked nicely.  I got a bunch of precare stuff in my IV including this anti nausea drug called Emend that is supposed to really help.

I was scared of the adriamycin but it wasn’t so bad.  I remember seeing the “Ann Jillian Story”* back in the eighties and Ann making all those faces because the medicine tasted bad going in.

* The Oncology nurse told us that she hated that movies because it made chemo look so awful…well it kind of was back then in the eighties, wasn’t it? It kind of is now.

I ate sour patch kids throughout the injection of two huge syringes full of red stuff.  I didn’t taste a thing.

The second medicine Cytoxin was given through IV.  It gave me a sinus headache that wasn’t great but liveable.

When we got up to leave, I was foggy.

We stopped at the wig store so I could get that wig halo I wanted and this cute sun hat.  By that time, my face was green.

I went home and slept.  I slept in my recliner and drooled on myself.  I slept in my bed the whole night through.

Now today after more anti nausea meds and a good old steroid, I am functioning.  Not fantastic by any means but functioning.

I am drinking some chicken broth, I made in advance.  Made it myself from a chicken  carcass!  In my crock pot. Aren’t I a clever girl?

And…we just got home to find a big box of pizza from my good friend Rachel and her husband and beautiful daughter.  Pizza from Chicago and an apple pie!

My brother sent me Chicago pizza last week too so this is just a bonus of love!

And now I am a little teary because I can’t believe how generous and kind my friends are towards me.

I love you all so much.

Please continue to send my your love and good thoughts and if you are so inclined, your prayers.

I think of each and every one of you every day.


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Tomorrow

Chemo starts tomorrow.  I am scared.  I am making myself stop reading the internet.  It’s strange.  People getting the same chemo regimen have different side effects.  It seems some get sick on Day 3, some get sick on Day 5.  Some can’t get out of bed, others can function.  I don’t understand how it can be such a different experience for people.

Of course, I am fully expecting to get hit hard.  I am hoping I don’t but I am expecting it.

My kids both got a nasty stomach bug.  The eldest came down with it early Friday morning.  It was bad.  Lot’s of sickness.  Then it was over.

Last night, as I was falling asleep, I heard the youngest talking in his sleep and moaning.  Uh oh.  I hoped he wasn’t getting it.  He did.

Violently ill for most of the night that boy.  My husband took care of it all.  I felt bad.  I can’t risk getting sick.  Right now, I am sitting here typing with a mask on.

We have some bad luck.

My friend arranged for cleaners to come.  They will be here while I am getting chemo.  At least I will have a clean house to come home to.

Today, we are tidying.  I took down all of the “Get Well” cards from the mantle and window sill so they can be cleaned.  Wow! I got a lot of cards.  Some people sent me two cards.  One person sent me three.

All I can say is, Thank you, thank you.  Those cards have given me a lot of comfort and hope.  Words can not describe how grateful I am for the support I have received.  I plan to do something crafty with those cards but for now I have them in a pretty bag in my room.  I feel happy just thinking about them.

I really have nothing to write today other than that I am very scared…and worried.  But I know this is just something I have to get through. Just like everything else.

A part of me is still hoping I wake up from this very bad dream.

Tomorrow, I will put on my big girl pants and go sit in a chair and take my medicine.  If you can, please think of me.


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Enough Ranting. Here’s How I’m Doing

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.

 

 


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A Rant

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.


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Even Though No One Asked, I Will Tell You What I Think

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.


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Preparing For the Next Step

As I said in my last post, there is not much I can do for the next couple of weeks but continue to heal from my surgery and get ready for chemo.

Today, I had an echocardiogram.  This very nice woman did an ultrasound of my heart for about half an hour.  I had to hold my breath a lot.

They are checking my heart because that “Red Devil” chemo can be cardiotoxic.  It can damage my heart muscle.

My oncologist has assured me that the dosage will not hurt my heart considering my young age.

It’s funny, all year, I’ve been feeling so old but breast cancer makes me a youngster.  And that’s not exactly a good thing.  But it’s nice to be called young when I feel so very old.

The nice lady doing the ultrasound told me she had a twenty-two year old breast cancer patient in her chamber last week.

Yeah, let that sink in for a minute.

I remember being twenty-two.  So fresh, so lithe, so young.  Breast cancer at twenty-two?  That would suck.

But it all sucks, doesn’t it.  It sucks.

I said before that I am doing everything I can to control this situation and that has included some shop therapy.

This week, I purchased many items to cover myself, multiple scarves, caps, and head wraps, for my soon to be bald head, including a really nifty hair piece that velcros into a baseball cap.  I ordered that one online because it was ten dollars more at the wig store.  Yes, I visited the wig store.  I was a bit underwhelmed.  I actually thought I found a wig I like but after trying it on again with my husband, we both agreed it was a little too Jennifer Aniston circa 1995.  I found another one that may do the job but I keep thinking how hot it’s going to be this summer and that a full on wig is going to be itchy.  Plus there are not many curly options.  I never thought I would say this but I miss my curly hair.  I got a Brazillian Blowout shortly before my diagnosis which I thought I was going to love but I hate it.  My hair seems so limp, so…dead.  I like my curls.  I miss them.  It seems I am going to be missing them for awhile.  Curly full wigs don’t look realistic.  Except for this wig halo thingie I found that you wear under a hat, any hat you want!  The wig store had one in a deep chocolate brown that I mostly like and almost bought but the lady at the wig store is ordering me one with some highlights and another that may be a bit more auburn like my natural hair color.  I am curious to see which one I pick.

My husband is hesitant about the curly wig halo because he is concerned about what would happen if the wind or a child pulled my hat off.  I told him that people would be in for a surprise.  In essence I would look like Larry from the Three Stooges.  IMO I could do a lot worse than looking like Larry.  And I can honestly say that the curly hair halo w/hat looks the most like ME.  And that is important to me.

Isn’t it funny?  I could care less about the boobs but the idea of losing my hair bugs me.  I’m not devastated or anything but it definitely bugs me.

So I’ve spent a little money and I don’t feel bad about it.  I consider it a swap for the money I will not be spending on hair cuts and color and products for the next year or so.  We curly girls like our products, believe me.  I bet in the end I will have saved money!

I also bought stuff to prepare for chemo.  Things like Biotene mouthwash in case I get mouth sores.  Mouth sores. Ugh! My dad had them when he was going through this, it was rough…he handled it and I can too.  I also ordered a big tub of L Glutamine powder that is supposed to help when I get Taxol treatment.  Taxol has a tendency to give folks neuropathy (aka tingling and numbness in the extremities-In the EXTREMITIES!).  I am also stocking up on ice packs because having ice packs on you hands and feet also prevent neuropathy.  I ordered some probiotics because chemo is hard on your intestines and stomach lining. I really hope they help.  I don’t want a sick tummy.  And I bought a big bottle of Claritin because I read that taking it on the day of my Neulasta shot and several days after has been show to decrease bone pain.  People, I do not want bone pain.  Nuh uh.

I take breaks between my research and shopping because I truly don’t want to obsess about this, but it is difficult right now. It’s mostly all I think about.  But there is just so much to do and so much to learn.  If it wasn’t happening to me, I would think this was interesting.  But it is happening to me and it sucks.

I’m still trying to distract myself with comedies.  I’m listening to a hilarious audio book.  Besides the online and offline chemo shopping and the doctor appointments and the being there for my boys, I’m doing ok mostly.

When we were at the drugstore, they had a display of water balloon kits, I bought two and gave them to the boys with the reminder that they needed to pick up the broken bits.  I rested in my room and listened to them laugh, giggle and play together for over an hour with no fighting right outside my door.  It was a lovely sound.  A little savasana?  I think so.

I can not tell you how crazy it is to be healing from surgery knowing that this thing is far from over.  I may not be able to control it all but at least I can say I was prepared.


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Life In the Pit of Despair

despair

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.