Wednesday, April 27, 2011

Bon Voyage Boobs

Bon Voyage to MY bombshells.  They were keepers.
I met with my plastic surgeon, Dr. Michael Zenn, yesterday.  I liked him OK.  He was mostly all business.  Maybe it would be different under different circumstances.

Anywho, he confirmed that immediate reconstruction was not an option for me because of my previous breast reduction.  There are concerns that the blood supply would not be adequate to sustain new tissue.  Once the mastectomy heals the blood supply and skin will be stronger and able to sustain new boobs.

I am a good candidate for all of the reconstruction options which is good I guess.  I will be able to build some good new ones.  If I choose to build them out of tummy tissue, he will want me to be closer to my ideal weight.  Interestingly, the tummy foobs will still think they are tummy and will gain and lose weight just like I do now.  He has patients that come back after losing weight with deflated foobs.

I am overweight again (this is putting it nicely) so I said I was not at my ideal weight and that I had about 60 lbs to go.  He asked if I thought I could lose that much weight and I said I had lost 100 lbs before and his eyes got real big.  He said, well obviously I could lose a substantial amount of weight and he would like to postpone the reconstruction till I am closer.  I don't really want deflated foobs, so all in all, it makes sense to wait.

Even if the weight didn't matter I would need to wait 4 months for my mastectomy to heal.  6 months if I have radiation.


So I cried when he left.  And proceeded to cry most of yesterday.

I guess I had held onto some hope that I could have something done.  Anything.

I have been obsessing with boobs and what they look like.  And how they make you look like a woman.  I've been looking at "after" pictures from mastectomies and there are some pretty terrible ones (I have since deleted from my history - I will not subject you to them) and some really nice ones (this link includes some reconstructed foobs too).  Honestly, I think having nothing (no boobs, no nips) makes you look 1) like a dude and 2) like an alien dude.

I don't want to be a dude.  I don't want to look like a dude.

As an aside, I'd still like to date a dude.  Will a dude date a girl who looks like an alien dude in that area?  Sigh.  Like I need any more obstacles in the dude department (ANNA!!!! BLARGH!).

Anywho, it just really sucks.  I no longer think I will die, but I sure do think Saturday morning is going to be a tough pill to swallow.

Next up is getting shot up with radioactive dye tomorrow and seeing which lymph node the fucker drains too (sorry Mom).  Then I'll do whatever I'm supposed to do for pre-op stuff and then have pictures of the radioactive lymph nodes.  I'll try and post and say how that went and how I'm feeling before the big day.

P.S.  I am totally giving everyone a free pass to feel me up.  I think it is important to feel what boob cancer feels like.  If you want to know before Friday, just ask.

P.S.S.  I dyed my hair much darker.  Was in a dark place.  Its a little too dark maybe, but love the cut.  This is the next morning, no make up.  Don't judge.

Love to you all.

Monday, April 25, 2011

Increasing My Positives

Sometimes to feel better I try to increase my positives.  Basically do more fun stuff.

During my forced vacation I am doing a lot of yardwork and house projects.  This is fun in the sense that it is moving, playing in nature and being productive enough to have something beautiful to show for your hard work.

But then there is just plain fun stuff.  Like this:
Me and Mom's Spectacular Easter Eggs

Dyeing eggs with your Mom is just as fun at 37 as it was at 7.

Thursday, April 21, 2011

Cutting out more than just the Fucker (last time Mom)

First - MRI of liver was clean!  WOOHOO!

Next, not so woohoo, the surgeon and oncologist agree that a double mastectomy (with sentinel node biopsy) is needed and it won't be done tomorrow.  It will, however, be done soon - 29 Apr to be exact.  BLARGH!  I wish I had a holy shit emoticon to enter here.

Neither could believe that I tested positive for the mutation.  Everyone was so sympathetic.  I guess it was a pretty big deal to get that news.

As a mutant, the surgical options that are presented all point to double mastectomy.  I could have the lumpectomy, but I would then need radiation and then a mastectomy.  I could have a unilateral mastectomy, but I would then need to have the other boob cut off after I finish treatment.  See the pattern?  I really don't want any more surgeries than necessary.  So I'm going with the double mastectomy.

DOUBLE MASTECTOMY.  This means that I will wake up from surgery with nothing on my chest but giant mutant scars.  No nips, no mounds (they keep calling it a breast mound).

Some people have the double mastectomy and then have immediate reconstruction.  This means that you get to wake up with foobs (fake boobs - I get to have fun new lingo).  However, because I had the breast reduction, the plastic surgeon does not think I am going to be able to have this option.  I don't really understand why, something about blood supply, so I am meeting with him next week to discuss my options.

I'm not going to be upset that I had the reduction.  I had oranges in socks, so I think it was the most awesome thing I've ever done.  Helped me tremendously (physically and mentally) right up until this day.  In fact, the oncologist thinks that having the breast reduction saved my life.  She thinks that I would not have found the cancer this soon if I had all of that extra breast tissue.

As an aside, the surgeon thinks the genetic testing saved my life.  I told him I thought that was a pretty dramatic statement. I just know that he was much more sympathetic this time around.  I'm not sure why.

So I don't may not get to reconstruct right away.  I am trying REALLY hard to be OK with that.

Some pros to having no mounds per my oncologist:

  • Once you have reconstruction, there are normal lumps and bumps during the healing process.  She says this brings great anxiety to her patients because they worry it is a recurrence.
  • Reconstruction is a 10-12 hour surgery.  You need to be in great shape to have the easiest recovery.  Delaying reconstruction allows me to train.  Like for the metro dash, but for boobs foobs instead.
  • Easier recovery from surgery
    • Double mastectomy + immediate reconstruction
      • 10-12 hour surgery
      • 4-5 day hospital stay with 2 of them in ICU
      • 6-8 week recovery
    • Double mastectomy
      • 1-2 hour surgery
      • Overnight outpatient facility stay (like a hotel)
      • 4 week recovery
These were very helpful tips - I would have never seen it this way.   This is when I began to cry though.

Some pros to having no mounds per Melinda (I'm trying):

  • No boob sweat
  • No jiggling boobs at the gym
  • Barbell does not get caught on boobs during a clean
  • Money saved on braziers
  • No digging underwires, falling straps, etc
  • Crumbs will no longer get caught on my shelf
  • No adjusting my shirt to cover cleavage
  • Damn this sucks - there really aren't that many

So we'll see what the plastic surgeon says.  Maybe he'll say your boobs have an awesome blood supply and we can totally make you some new ones AND we'll build them from your tummy so you'll get a tummy tuck too!

I don't know.  I'm starting to think waiting for the recon is not such a bad thing.  I'm so anxious, I would hate to have more anxiety about lumps and bumps.

I have much to read and learn.  There are lots of things you have to consider when you recover from a mastectomy.  Sigh.  At least I have a week.

Mom is here and we are just hanging out. She came with the plan that we would be in surgery tomorrow.  Unfortunately, the plan was changed while she was already on a plane on her way here.  So we will be trying to do some fun stuff and relax.

My oncologist said that if we don't get this resolved (I guess she meant get the fucker out - ok last time for real mom) within a week, she would be very disappointed in my entire care team.  I don't think I'd want her to be disappointed with me.  EVER.  Thank goodness she is on my side.

I sure do have a lot of people on my side.

Tuesday, April 19, 2011

I'm special, but not in the good way...

I'm positive for the BRCA2 gene mutation.  Guess what the chances were for me to test positive?  4.8%.  FOUR POINT EIGHT!

You wanna come too, don't you?
WTF???  Why wasn't a million dollars tied to those odds?  I would be rich and could run away in my silver bullet that I pull with Sunshine (my jeep).  NOTE:  I totally want to run away right now.  I mean really.  I'm not kidding.  I would buy a silver bullet trailer and hitch it to sunshine and Tboz and I would go live at the beach. I would work at a nursery and maybe bartend for extra money.  When we grew tired of one beach, we'd move on.  I would have my house sold and all my stuff donated or given away.  No, I haven't been thinking about it much....really.

Anywho, they call the mutation deleterious.  Great.  Because breast cancer totally isn't deleterious already.  One more thing.

I swear, as soon as I get to a point where I get my head around everything and what the plan is, I get a bomb like this dropped on me and everything goes to shit again.  Immediately.

I don't feel like giving all the detail, but basically me having this deleterious mutation means that I had a roughly 48% chance of getting the breast cancer (BINGO!) and am much more likely to get a SECOND completely new breast cancer (increased risk of about 50%) and to wrap this all in a nice pretty package - much more likely to get ovarian cancer (increased risk of about 35%).

Yay me!  I'm so special and lucky!  Can you tell I am super pissed?  Can you hear it in my typing?  I can.  BLARRRRGGHHH!

I still need to talk to the surgeon and oncologist, but they will most likely suggest a double mastectomy.  Double mastectomy reduces my risk of getting the second breast cancer down to like 5%.  Its hard to argue that.

There are other options - like just treating this cancer and then screening really closely for any recurrence or new cancer.  But I just don't think I can handle the anxiety of just waiting to get this diagnosis again.  I mean, I'm barely making it through this one. All the testing and scans and appointments and doctors and time out of work and time away from socializing and ANXIETY and depression and then the actual treatments!  You want me to go through this again?  NO THANK YOU. 

So for now, I am pretty sure I am going to go forward with the plan that is in place to get the cancer out of me and to allow them to get the oncotype "cooking".  I really want to know if chemo is in my future and don't really want to wait to remove the cancer that is already growing inside of me.

Besides, I can do the mastectomies later.  When I get my ovaries removed.

Yep, you heard that correctly.  Part of the treatment for my cancer and prevention for the ovarian bit is removal of my ovaries.  Yep, good times.  Exactly what part of me will be a woman?  My hoo ha I guess, but I'll be in menopause.  At age 37.  Hot flashes and mood swings and the other good parts related to your hoo ha.  Good times.

I don't recommend googling
Had to discuss fertility too.  Could bank eggs, donor, blah blah*.  I don't think I want that.  Especially now that I know I am a mutant.  A deleterious mutant.  There is always adoption, but I am pretty sure it will only be of the canine variety.

Oh, and that liver MRI that I wasn't supposed to get shot up for?  Yeah, they shot me up.

Son of a bitch this day sucked.

*One of the most awesome things anyone has offered to help me has been my BFF in the whole world's womb.  Yep, she offered to carry a kid if I wanted her to.  Seriously?  I am one lucky girl.  Thank you my friend.  Such a generous, kind, selfless, thoughtful thing.

Saturday, April 16, 2011

Sentinel Node Biopsy - scared, not gonna lie

Just doing some studying up on whats to come.  Turns out most of the folks in the forums* say getting shot up with the radioactive stuff for the sentinel node biopsy is more painful than NATURAL childbirth.

*I trust the most - the forums got me through those first few days after diagnosis...

This is what I have to look forward to the day before surgery and then again the day of surgery.


Why does this have to be so hard, scary and painful????

Step One of Plan - Cut the Fucker Out (sorry Mom)

I'm pretty sure my lump,
even though evil, is fabulous
and purple.  And I'm gonna
cut the fucker out.
I had an appointment to meet with Dr. Olson again on 13 Apr.  My good friend Jess went with me again.  She helped me not listen to the talk in the waiting room, which was super helpful.  We also just chatted during the TWO AND A HALF FREAKING HOURS THAT WE WAITED FOR HIM.

Funny story about Jess...the TT and their helpers always introduce themselves to the people with the patient which I think is great, because really, they are treating the whole family.  Anywho - one of the assistants came in and said, "who do we have here with you?  Lets see, daughter and mother?"

WTF?  Daughter?  First, Jess is not that young.  And second, I am not that old.

The little assistant realized her error quickly and tried to recover, but really, how do you recover from that?  Jess liked to make comments about me being the mom and my mom being the grandma all day.  Har Har Jess.

Anywho, when we finally met with Dr. Olson, he pretty much said lets do chemo and then surgery.  Oh and your MRI was clear.  And left to find my oncologist.  Seriously, did not allow for questions or anything.  Surgeons.

The reason for wanting to do chemo first is to shrink the tumor so that my boob doesn't look as bad after surgery.  They have to be able to cut the tumor plus some more around the tumor to make sure they get it all.  Mine is about an inch big so he will be removing about 3-4 inches of boob.  Look down and think about that.  And it just leaves a big ole dent.

So Dr. Blackwell comes in and we start talking about my options.  She described if we did chemo first:
  • We would need to wait for the oncotype.  Recall my other post about this test.  This is the one that checks if chemo will work for me.
    • The oncotype requires a certain amount of tissue.  We would be using the tissue from my biopsy which might not be enough.  There would be a chance that after we wait to see if its enough (maybe a week or more), it might not be enough.
    • If enough tissue is available, we would then have to wait for the results (maybe 2 more weeks).
      • The results could say that chemo wouldn't work for me.
  • Dr. Olson would still need to do a surgery to biopsy the lymph nodes and Dr. Blackwell would need the final pathology report.  This biopsy is called a sentinel node biopsy.  Remember how I said part of staging is knowing if cancer is in your nodes?  Well, this is how they find that out.
    • This is much better than the old school way.  The old school way they had to remove all or most of your lymph nodes around your boob.  Lymph nodes are good things to have.  They help drain and filter your lymph and keep your immune system in check.  When you don't have these, you have to be really careful about injuries (infection) and sometimes your arm can swell up big as a house.  And, I wouldn't be able to lift heavy shit anymore.  This new way allows the surgeon to just take a few lymph nodes.  Average is to take about 3.
      • Even if he just removes the 3, there is a chance that my arm will swell up big as a house and that I cannot lift heavy shit.  Sigh.  Sigh.  Heavy HEAVY sigh.
    • They shoot up my boob next to the tumor with radioactive dye (damn, I am getting shot up ALOT).  Then they wait to see which lymph node(s) "light up".  The theory is the one that lights up is the one that the tumor drains to and is most likely the first to get the cancer (if at all).  Supposedly they use a metal detector like thing to look for the ones that "light up".  The surgeon will then pluck out the one(s) that light up. 
    • If they look and feel abnormal during surgery, the pathologist can freeze them and look for cancer right away.  If there is cancer, they will remove all of the nodes.
    • The final pathology report would be available about 1-2 weeks later.  
  • Then, if all is good we would do chemo.  
    • There is a 1 in 10 chance chemo would make the whole damn thing disappear.  It would kill the fucker.
    • There is a 1 in 3 chance chemo would make the thing smaller by up to 50%. Just a little killing.
    • There is 60% chance nothing would happen
Then Dr. Blackwell described just going ahead and cutting the fucker out:
  • Dr. Olson could cut the fucker out and do the sentinel node biopsy all at the same time.  One surgery.  One bout of anesthesia.  One recovery.
  • I wouldn't have to wait a month to start killing the fucker.
  • The oncotype would be done on the tumor itself so we would be sure to have enough sample (no additional surgery or biopsy).
  • Dr. Olson would have to take more tissue out and the cosmetic result would be bad (he kept calling it a defect).
  • I could always get super nice fake melons later.
We talked about all of this for quite awhile.  Dr. Blackwell wasn't even scheduled to see me, but she took the time to talk about all of this with me and Jess.  I decided that my biggest problem right now was in my head and I didn't want to wait anymore.

So I am going to cut the fucker out ASAP.

The nurse came in after that and scheduled me for first available which was 22 Apr.  I thought that was pretty soon.  I was expecting to have to wait a few weeks.  Then my mom pointed out that it was Good Friday.  I hope that the people working that day aren't bitter.  Oh well.  I will tell them all thank you for working that day.  My boob, body and especially my mind thank them.

You may be wondering why I don't have to have or that I have not chosen to have a mastectomy.  Originally when all of this started, I was just thinking lets cut both off to be safe.  I have since learned some stuff:
  • Most importantly, the chances for survival are the same for lumpectomy vs. mastectomy.  
  • Having my own nipples are important to me.  I've seen the fake ones and I don't think I could deal with that.  
  • It is a pretty radical choice for a tumor my size.
  • I've looked at mastectomy photos.  I just can't do it.
  • The plastic surgeon that built my boobs after the reduction did a pretty good job.
I could have immediate reconstruction (new methods even include building boobs from tummy fat - a tummy tuck and boob job!) but that is an even longer surgery with much higher risks.

Also, I am a bit concerned about recurrence.  Lots of stories talk about people having a lumpectomy initially and then even a few months later having a recurrence and needing a mastectomy.  But Dr. Blackwell assured me that the risks of recurrence are equal in lumpectomies vs. mastectomies.  So I chose lumpectomy.

Now, there is still a chance that this plan could change (GAH FREAKING UNKNOWNS!!!).  I am still waiting on my genetic testing results.  Remember the BRAC gene mutation I talked about?  Well if I am positive for the BRAC gene, then its a double mastectomy for me.  Also, remember the "questionable spot" on my liver?  Well if that's cancer, well then we are all in for a lot of changes.  And I don't want to think about that.

I will go in on 21 Apr so that they can shoot me up with dye for a practice run at finding my lymph nodes (called mapping) and to do pre-op stuff.

*EDIT - My superwoman of a mom is coming on Wednesday to help me through all of this.  Seriously, you are never too old to need your mom.  And I've got a good one.

Keep your fingers crossed, say some good prayers, send good ju ju, think happy thoughts, rub Buddha's belly, do a rain dance, send some positive vibes or anything else you think might be helpful - lets hope that lumpectomy is all that is needed.

Hmmm.  After writing all of this I'm having a few second thoughts.

Thursday, April 14, 2011

The Treatment Team (TT)

I had my meet and greet with my Treatment Team (TT) on 6 Apr at 8:00am.  I was scheduled to have baseline labs and meet the oncologist and then meet the surgeon later that day.  My Mom and my very good friend Jessica came with me and stayed with me ALL day.  You will understand how awesome they are when you hear how the day went.

To sum up the day very briefly - WAIT, explode with info, WAIT, anxiety, WAIT, info tidbit, WAIT, WAIT, anxiety, hunger, WAIT, explode with info, WAIT, WAIT, WAIT, hunger, frustration, info tidbit, HURRY, WAIT, test.

Duke is huge.  And people come from everywhere to be seen at Duke. But, this means that the doctors spend time with each patient as necessary and everyone waits.  Could be 5 minutes, could be 3 hours.  They even use restaurant pagers to help.  Whats terrible about the waiting is that the folks in the waiting room talk about their own cancer experience.  This is scary to hear as a newly diagnosed person.  I hate this part.  Especially when they talk about dying.  This happened the day of my biopsy too.  It just makes everything scarier.  I am going to start bringing my ipod.

Anywho - we first met with my oncologist, Dr. Kimberly Blackwell.  She is awesome.  She is blunt and frank and wants everything done stat.  But at the same time totally cares about me as a person.  I think I mentioned that I used to work with her when I worked for the Duke Clinical Research Institute (DCRI). She remembered me after a little reminiscing.  This made it much more comfortable.

Dr. Blackwell will be the head of my TT.  She likened it to the TT being a hand.  She is thumb, then the fingers are the surgeon, radiologist, plastic surgeon, genetics / fertility.  I may not have remembered that correctly, but you get the drift.

Dr. Blackwell will be managing treatment of me from head to toe and will be managing any chemo or hormonal treatment I might need.  She specializes in breast cancer in young women so we talked a bit about maintaining fertility.  Chemo can affect your fertility as can some of the treatments used to treat my kind of cancer (ER/PR+).  She wants me to see a fertility specialist (she has one that she works with regularly) to discuss freezing some eggs.  She told me that this is a good idea even if I'm not sure about kids so that I have a safety net.  She said that there is much more success with freezing embryos vs. freezing eggs.  That means I would need a donor, you know, of the sperm.  Holy moses, I don't know how I feel about this.

She did not think that I needed any scans.  She didn't feel like my cancer was anywhere else in my body.  But she could tell that I was anxious and I told her my biggest fear was that it was somewhere else in my body.  So she ordered the bone and CT scan for me.

She also wanted to make sure I didn't carry the mutated BRAC gene so she wanted me to see the genetic counselor.  She made this happen the same day!  Later the counselor said, something to the effect that Dr. Blackwell wants what she wants when she wants it.  For this I am EXTREMELY grateful.  I hate unnecessary waiting and it sounds like she does too.

She said that given the size of my cancer, I could probably have a lumpectomy (breast conserving surgery) so she wanted me to see the radiologist as radiation is required treatment for a lumpectomy.  She made this happen that day!

Finally, she talked to me about the Oncotype.  The Oncotype basically is a test that takes my tumor (either from my biopsy or the actual sample from my surgery) and spits out a magical number that tells Dr. Blackwell if chemotherapy would work for me. Personally, I think this is awesome, because if chemo is not going to benefit me, THANK YOU for not making me do it.  The test can also help predict if my cancer will come back.  Sounds like a little voodoo to me, but I trust my oncologist.

We didn't talk much about my treatments because she needs more information.  I was OK with that, because I felt why ask questions about something you may not have to do?

Next I met with the genetic counselor.  I talked about that in my previous post, so skipping that.

Then we waited forever to meet the radiologist, Dr. Janet Horton.  This radiologist will be the one doing my radiation treatments not the radiologist who did my scans / biopsy.  Radiation is always given last, so to be honest I didn't listen to a lot about what they said because I knew it didn't matter till much later in my game.  I did hear, and remember, that they do worry about the effects of the radiation treatments on my heart.  Especially because my cancer is on the left side (same side as heart).  I mentioned my concern about the heart disease in my family.  Basically it boils down that I need to be uber heart healthy (diet, exercise, etc) to counteract this.  I also had to meet her resident first, which blew, because he was over eager and it was uncomfortable and awkward.

Finally, we waited about 2 hours to see the surgeon, Dr. John Olson.  He was nice enough, but did not spend a lot of time with me.  As with most men I am around, I turned into a giggly timid school girl.  I need so much therapy.  He basically said that he thought chemotherapy first would be best to try and shrink the tumor before cutting the fucker out*.  He thought all I need is a lumpectomy.  I was still not sure as I have talked to so many and read so much about women who have a lumpectomy and then the cancer comes back and they have to have a mastectomy anyway.  I am not down with multiple surgeries.  He wanted me to get an MRI to see if the cancer was in the other boob before he cut.  I agreed.  He also wanted me to get an ultrasound of my lymph nodes.  He pulled some strings (aka called his buddy) and I was able to do this that afternoon.

*I rarely use the f word, but recently after my surgery was scheduled, I made the comment to some close friends that we were going to cut the fucker out, and well, I guess it stuck.

My follow up was to be with the surgeon once the MRI results were available which was 13 Apr.  I will post about this later.  But the long and short is - lumpectomy 22 Apr - chemo is still up in the air.

We finally left Duke around 5:30 that day.  I really felt like I left there with no plan, a lot of information and MANY MANY MANY more unknowns.  It was disappointing and exhausting.  I came home and fell asleep.  I felt like I had the flu the next day.

Mom and Jessica were so awesome.  I was so happy to have Mom for comfort and Jess for comic relief.  Made a very stressful day manageable.

THANK YOU TO JESSICA AND MOM for spending this day with me!  SO GRATEFUL!  and THANK YOU to Amanda, Nancy and Marg who made this appointment happen a whole week sooner for me!

Baseline Scans and The Path Report

When you are diagnosed with the cancer, you wait for everything.  I swear the waiting is worse than the diagnosis.  Because I am waiting to know how bad it is.

I told my mom the other day, how am I supposed to fight when I don't know who my opponent is?  Its true though - how can I mentally prepare if I don't know what I'm up against.

This is why the treatment team (further to be known as TT) needs to order so many tests and scans.  They want to know their opponent too.  The tests and scans tell the TT where the cancer is in my body (outside of the boob) and how it behaves.

The first test was the biopsy, which I mentioned in my previous post.  I realized I didn't say what the biopsy said.  The biopsy is like the personality report of your cancer.  It tells the TT more than anything else.  I can't tell you what kind of efforts I made trying to get a copy of the damn thing.  I'm smart enough to understand the results and wanted to see them with my own eyes.  But anyway, my cancer's personality is kind of like the me I always wanted to be.  Aggressive and girly.  I will explain.

My Cancer is Invasive Ductal Carcinoma (IDC). It is ER/PR+ and HER2 -.  Here is the break down of what that means:

  • Invasive - this means it is growing outside of the ducts and is more aggressive than other types.
  • Ductal - of the ducts.  The ducts are where the milk is carried in the boob.
  • Carcinoma - this just means cancer - stupid fucking cancer
  • ER - Estrogen receptive - this means that my cancer is fed by hormones, specifically estrogen.  It also means my cancer's cells attract estrogen because there are a lot of estrogen receptors on my cancer cells.  Likes keys and locks.  Estrogen is the key that fits in my cancer cells lock (thats what she said).
    • This is rare for someone young like me.  
    • This is a good thing, because there are more treatment options for cancers that are hormone +
      • These treatments, however, basically put me in menopause 
  • PR - Progesterone receptive - same thing as estrogen - my cancer is also fed by another hormone, progesterone and has lots of progesterone receptors.
  • HER2- - HER2 is a gene that is expressed in some breast cancers.  It characteristically more aggressive.  Mine is negative, which is good because it is not aggressive, but bad that it limits one of the treatment options. 
  • Histopathology Grade 3 X 3 - just a grading scale for 3 different categories.  The cancer is graded from 1 to 3 of how normal it looks.  3 being less normal.  I got a 3 for all 3 categories.  My cancer is fun and eclectic!
There is another personality trait that is significant and that is whether or not I carry a a mutated version of the breast cancer gene called BRAC.  If you have mutations, you are more likely to get breast cancer.  And this would mean that I would be more likely to get it in my other boob.  Not many people have it (maybe 5%), but because I am young (average age of breast cancer patient is 63), and because I didn't have a strong family history, we are seeing if I am mutated (ha ha).  I had to see a genetic counselor for this.  The test was basically me buying a $3500 bottle of scope and swishing it around and spitting it in a tube.  Thinking about the effect the news of me being + for the mutation would have on my family, my cousins, aunts...well, I got kind of sad.  I had this done 6 Apr and still don't know the results.  If I am positive, the TT will most likely recommend a mastectomy.  BOOOOOOOOOOOOOOO!

Most people wonder what Stage I am.  Staging is kind of like finding out how serious it is.  There are 4 stages, with Stage IV being the worst.  Staging can't be done until we know 1) Size of the tumor 2) if the cancer has entered my lymph nodes and 3) if the cancer is anywhere else in my body.

At this point, I only know the size - which is about 2.6cm.  Someone said to me, wow that seems tiny.  I kind of got upset.  So I said you might change your mind if it was in your boob.  I guess it is small, one inch is 2.54cm, but according to my oncologist, the average size is 2.3cm.  Based on size alone, I am at least a stage II.

Anywho - we have to do more tests to find out if the cancer is in my lymph nodes or somewhere else in my body.  Having cancer in your lymph nodes is bad because it means it is most likely circulating (or could circulate) in your blood stream.  If it is in your nodes, its probably elsewhere.  Which is no bueno.

I have already had a few tests to see if the cancer was in my lymph nodes.  I had an ULTRASOUND of my lymph nodes on 6 Apr (Ultrasound like they use to find babies, luckily there were no babies in my armpits - although when I made this comment during my original ultrasound, the radiologist said we could be millionaires if we did find a baby).  The radiologist said my lymph nodes looked normal, but that normal looking lymph nodes on ultrasound could still be cancerous like 40% of the time.  Not sure why I had this done then.

Next I had an MRI of my chest on 12 Apr.  This thing blew.  I hate MRIs.  First, they have to remove all of my body jewelry.  Nose ring - no biggie.  Belly button ring - WTF?  I've had this thing in for like 15 years or something.  I don't know if it comes out.  Well damn if I didn't have the best tech ever that got it out and later helped me put it back in.  Anywho - next, they shoot you up with dye.  I don't do well with needles or blood or veins I go, I'm getting woozy just thinking about it.  I pretty much almost passed out.  And this MRI was super fun, because I laid on my stomach with my boobs hanging out of this rectangular hole.  HA HA - good times while the tech manipulated my boobs.  HA HA - fun fun.  Then, headfirst into this tube and it was regular schmegular MRI - loud clanks and buzzes and all - for about a half hour.  I could at least see out of this machine.  All of that to say that this one came back normal.  I still haven't see this report with my own eyes, but I will trust my surgeon.  He says that this means my chest wall and lymph nodes as well as my other boob look normal.  I was a little worried about this one, so this was good news.

The final test to do to check the nodes will be done during surgery.  I will talk about that later.

To check if the cancer was somewhere else in my body, I had a Bone Scan and CT Scan on 13 Apr.

The bone scan is used to see if the cancer is in my bones.  I thought the whole thing was interesting.  They shot me up with radioactive stuff and then made me wait around a couple of hours for the radioactive stuff to get into my bones.  They asked me to drink a lot of water while I waited.  I didn't feel different after they shot me up.  But I thought about the Japanese.  Then after a couple of hours I laid on this table (face up this time - thank goodness) and they wrapped me up like a burrito and then sandwiched me between 2 picture taking plates and sent me through a tube.  Then I came out of the tube slowly like a pizza oven.  It took about 20 minutes.  When I started to come out of the tube I saw my skeleton on the screen (with a fat body outline - sigh).  It was awesome.  I didn't see cancer and I don't think my tech did either.  I asked, but she couldn't say.   Anywho - this test came back normal.  I still haven't seen this report with my own eyes but I trust my oncologist.

The CT (CAT) scan is used to see if I have cancer in my chest, abdomen or pelvis.  It was at the end of the day and I was just happy to get it over with. This one I laid on this table and got shot through this very short tube several times.  Towards the end, they had to shoot me up with dye.  This dye I DID feel.  They told me I would feel hot and then like I peed my pants.  Yep.  They didn't lie.  It didn't last long though, but I truly thought I peed my pants.  This test came back almost normal. They found a "questionable spot" on my liver.  The doctor was not concerned, but wanted to rule out cancer in my liver so that there are no surprises.  So I have to go back for an MRI of my liver 19 Apr.  I did confirm that I DO NOT have to be shot up again.  Yay!  This sucks, but I really just think its liver damage from all of those beers I drank in high school and college.  I didn't mess around.  We will see.  If there is cancer in my liver, this is really really really bad news.  This will automatically put me at stage IV.

I think that is all of the tests I've had so far.  I see the fertility doctor next week, so I am sure there will be testing there too.

In case I don't post anymore for a bit, I am scheduled for surgery - a lumpectomy - 22 Apr.  More to say about that later.

Thank you everyone for the kindness, support and understanding.  I totally think its funny that you all know me well enough to call me out on my isolating.  But, understand that sometimes that is the best way I know how to deal.  AND that sometimes, I am just tired - emotionally, psychologically and physically tired.


Sunday, April 10, 2011

I Have The Breast Cancer

I did.  So should you.
That's right.  I have the Breast Cancer.

One in eight women get the breast cancer.  If there were eight of us in a group, don't worry - its me.

But first, just to bring everyone up to speed since my last post.  I had a mental break down with the stupid scale.  So I quit Weight Watchers, put my scale away and followed paleo pretty strictly.  This went well, felt lots better, clothes fit better.  Then, had a sweet tooth that wouldn't go away with paleo alternatives and well, lets just say that I have a sweet tooth now every freaking day.  Food has been my source of comfort lately and I am steadily gaining weight. Not according to my scale, because it is still put away, but according to the doctor's scale.  Which brings me to my big news.

About 2 months ago I noticed a lump in my left boob.  Didn't think much of it as I have pretty lumpy bumpy boobs.  However, I was having shooting pains, I was itching and there was a bit of an indentation next to the nipple.  I thought it would come and go with my period, but it didn't.  My gut was telling me it was cancer.  At the urging of my friends and family, I went to have it checked out.

My primary care doc, Dr. Rubin, ordered a diagnostic mammogram (a few extra angles than your standard screening mammo) and ultrasound (looks to see if the lump is fluid filled - cyst or solid - tumor).  I had these done on 21 Mar.

The radiologist who did my ultrasound thought that the lump looked like scar tissue from my previous surgery (I had a breast reduction in 1999) or dead fat cells (necrosis), but she couldn't rule out cancer so she suggested a biopsy.  She was able to do it that same day, for which I was grateful.

The biopsy was a ultrasound guided core biopsy.  The radiologist numbed the boob with novicane type stuff and then shot a needle at an angle to the lump and took four chunks (cores) of tissue.  She used what sounded like an ear piercing gun to get the chunks.  My boob was pretty sore for several days and super duper bruised, but other than that (and the severe emotional trauma), it was no big deal.

On Wednesday, 23 Mar, I woke up and couldn't feel the lump. I thought yay!  It was just a cyst and she poked it with her needle during the biopsy and it exploded and went away! I was starting to feel pretty good.  And then around noon I got the call.

It was Dr. Rubin.  She had been trying to reach me since Monday evening (I later learned thats when the results were released).  She asked if I was sitting down.  Still it didn't dawn on me what she was going to say.  I was sitting down - luckily I was working from home.

She said "it looks like it is cancer".

I laughed.  I did.  Inappropriately.

I really don't remember much more of that conversation other than Dr. Rubin was kind and reassuring.  She told me to call the breast clinic at Duke to get an appointment with an oncologist (gulp) and a surgeon (gulp, gulp).  She said not to expect to get in earlier than 2 weeks from now.

WTF????  2 weeks?  Do you know how long that is?

After crying profusely, I called my mom.  And cried more.  Then she cried.  Then I cried more.  And more and more and more.

I composed myself enough to call the breast clinic.  I actually knew one of the breast oncologists at Duke, Dr. Kimberly Blackwell, because I used to work with her when I worked for Duke.  I requested her as my oncologist.  The scheduler said she could see me 13 Apr. They lump all of your appointments together - the oncologist, surgeon and radiologist so it is difficult for a new patient to be seen quickly due to the logistics required.

WTF?????  That is 3 weeks away!!!!  WTF am I supposed to do for 3 weeks?

I then told some of my close friends later that evening - don't remember those conversations.

I took Thursday and Friday off of work (work has been so amazingly supportive).  And I cried and cried and cried.  And laid on my couch in a ball.  And really couldn't find energy to do anything.  I don't remember much about this time.

Eventually, I posted the news on Facebook because I had posted that I was going for a mammo, then I posted about the biopsy and well, people were concerned.

I have subsequently received so many phone calls, texts, emails and visits from friends near, far and long lost offering support of all kinds.  It has been very very overwhelming.  Usually, this is what brings the most tears.

One offer of support was from my work colleagues - our co-worker's husband is a breast oncologist at Duke and she offered to ask him to call in a favor to Dr. Blackwell to see is she could see me sooner.  AND IT WORKED!  Visit was moved to 6 Apr.  OMG OMG OMG.  This is the most awesome thing ever, because the waiting and unknown SUCK SO BAD SO BAD SO BAD!

Mom and Dad were already planning a visit (my family lives in Texas) the week after my biopsy way before we had this news.  So they kept their plans and came for support and to visit.  These visits are usually pretty stressful for me without new cancer news, so while it was great to have them here, I found it to be kind of difficult.  I wanted to entertain, but had zero desire or ability to do so.  However, Mom was able to extend her visit long enough to go to my doctor's appointments with me - super grateful.  Everyone needs their mom in times like these, even at age 37.

I am having lots of trouble with concentrating at work and I'm making mistakes.  I am considering taking some time off of work, but I don't know.

The unknown of whats to come is terrible.  I can't even explain how terrible it is.  My thoughts / feelings are unpredictable.

I'll think, "It's just breast cancer - your totally going to be fine".

Or, "Its just breast cancer - you are weak for being scared because it is totally treatable"

Or I'll think, "You can totally beat this!"

Or I'll think "I'm going to die".

And sometimes each hour or minute will vacillate between dying and fighting.  Today I wondered how long it might take for me to die if I refused treatment.  I have also thought whats the point in saving a fat body.  Its terrible and I wish I could stop.  I don't sleep well because these kinds of thoughts wake me up.  I have been assured that once I have a plan, things will get better.  I hope so, because this sucks big fat donkey you know what.

I've found that yard work or house work helps quiet my cancer thoughts.  And not talking to people.  But I know the latter will not be good for me long term.  Sigh.  I will have to learn how to be OK with asking for help.

Next post - visit with my treatment team...I'm overwhelmed from the information and possibilities from this visit.  I still have no plan - so more unknowns.  Yay.

P.S.  THANK YOU SO MUCH to my friends and family for all of the calls and messages.  I am sorry if I haven't / don't get back to you.  Its not because I don't care, but probably because I just don't have it in me to talk about it or to pretend I don't have the cancer and not talk about it.  Please don't stop calling or messaging - I NEED THIS and I re-look at and listen to them when its hard.