A Little More Information...Technical Style

I had my first post-op appointment with my surgeon this past Thursday.
First and most importantly he took the drain out!!!!! HOORAY!!! That thing was making me miserable.
Second....my surgeon is so nice and caring.   How lucky am I to have such a compassionate surgeon.
Thirdly, I got some better soft fake boobs to put in my bra.  Now I can go in public :)
Lastly, I got the full details on my pathology report.  So here are some of the details for those of you that like the details:

WARNING:  I give LOTS of technical terms  (trying to summarize a pathology report for the lay person while keeping science terms intact was kinda challenging)

 (but I love it - I am a science nerd)!!!!

- My cancer has been staged as 2B (pT2, pN1, pMX).
- My breast cancer is an aggressive, poorly differentiated, infiltrating mammary carcinoma.  That means it is a nasty, fast growing invasive cancer.  It is also more aggressive than they originally thought. The largest tumor is 3.5 cm, but there were other smaller tumors and the cancer was found throughout the breast.
- From what I can understand my mastectomy specimen (I believe this is the whole right breast) weighed 1800 grams and measured 26.0 x 23.0 cm with a thickness of 6.5 cm.  1800 grams is equal  to about 4 lbs.  So, I think my right boob weighed 4.0 lbs....pretty crazy :)  At least the tissue part of it did.  I did weigh myself before and after surgery and I had lost 8 lbs.
- Metastatic carcinoma was found in both sentinel nodes, but NOT the other 3 lymph nodes.  This hopefully means that it spread to the sentinel nodes (this is where they think breast cancer spreads first before spreading throughout the lymphatic system and the whole body) and has not spread to the other nodes yet....I hope so :)
- Both tumors tested were positive for Estrogen Receptor in 100% of tumor cell nuclei AND one of the tumors tested positive for Progesterone Receptor in 20% of tumor cell nuclei.  This means I am a candidate for hormone therapy.
- Both tumors tested were positive for Ki-67 (cancer antigen found only when cells are growing and dividing) in 30% of tumor cell nuclei, with strong intensity.  This is a very high result.  This means my cancer cells are rapidly growing and dividing.  When the percent is higher than 20% it is considered unfavorable with a poor prognosis.
- Histologic Grade: Poorly differentiated : score 8-9 (this is a very high score)
- Combined Bloom Richardson Score: 8 (means the cancer is poor differentiating)
- In-situ tumor is found ALL over the outer half of breast
- Margins were negative for carcinoma.  This means they got all the cancer out of my chest with the mastectomy.
- The Her-2 results were indeterminate so they are doing another test.  This test result will determine a lot about my chemotherapy plan.
- My surgeon is going to wait to schedule putting in my port until after the treatment plan is finalized. 
- My doctor (again) told me how sorry he was for all this bad news and how he thought was not fair that I had been handed an awful long history of medical issues.  I told him, "It's not your fault...lots of women get breast cancer". [I had read 1 in 8 women will be diagnosed with breast cancer]  He looked at me surprised and said, "Yup, a lot of OLD women!!!".  He went on to tell me that it is common for 70 year old women to get breast cancer, but very uncommon for young women like me to get it. [he called me young....  :)  He said most of his breast cancer patients are elderly.  He also said unfortunately most of the younger women that get breast cancer get the more aggressive forms and the old ladies get the slow growing.

So hopefully that was enough information to satisfy my science-minded friends and not too confusing for those who maybe have other talents :)   It is not very good news.  I was hoping for better, but IT IS WHAT IT IS.  I choose to spend my energy on things I can change.  I choose to not spend my energy on feeling sorry for myself.  Don't get me wrong...I get sad and have my bad moments, even days of yucky.  But, LIFE is TOO SHORT.  I choose to be happy.

My first oncology appointment is this Tuesday morning.  I already have an oncologist in my town that monitors me due to my first cancer (GIST).  I am going to stick with him.  I should find out what the plan is this Tuesday...I think.  I just want to know....as I have said before knowledge is power.

I am feeling pretty o.k. today.  I even went to church for 2 hours this morning to watch my primary kids practice for the primary program.  I am the music leader and they pushed back the performance until November 11th in hopes that I will feel good enough by then to lead them in their performance.  They even called me an assistant to lead the music when I am not feeling good.  So I went today to see how they are doing even though I don't have enough energy to lead them yet.  It was amazing to see their happy faces seeking me out.  I LOVE them...what wonderful medicine for the soul to have 50 kids loving, missing, and singing to you :)

One Week Update & Some of the Tests are In

     It has been one week since I had surgery to remove my right breast.  I had surgery on Thursday morning and everything went well.  I stayed in the hospital overnight and elected to go home early Friday night.  I could have stayed another night - my surgeon said it was completely up to me (he is so nice).  They took great care of me in the hospital, but I was sharing a room and the bed wasn't very comfortable.  I wanted to go home to my cozy bed where I could truly relax and be around my little family.  I was told many times before my surgery that it wasn't a very painful surgery and I had a really hard time believing it.  But, it is true.  It has not been very painful.  Don't get me wrong - there is pain and it is uncomfortable and extremely emotionally disturbing (more on that later), BUT not that painful; especially compared to other surgeries I have had.  The biggest pain comes from the lymph node biopsy.  My armpit and back of my upper arm/shoulder are completely numb.  I have only one drain (I was told I would have 2), but oh my it is the most uncomfortable thing.  It is kinda gross to see fluids draining out of you and to have to empty the drain.  But, the worst part is it hurts and it keeps getting clogged.  Thank goodness that I have a kind husband who is really good at unclogging my drain.  I am hopeful that they will remove it tomorrow at my follow-up appointment with my surgeon.
     Not much had happened since I had my surgery.  I lay around and watch TV (thank you Netflix and Hulu+).  I have gotten on a horrible schedule where I can't sleep at night and I sleep all day.  I am slowly reducing my use of my pain pills.  I have not left my house.  I have worn a nightgown all week, haven't put on makeup or done my hair.  My mom takes great care of me and has been making me yummy food while taking care of my kids and doing all my housework.  My kids have been super sweet, but they are definitely off.  Carlie keeps praying that I can get a new breast soon and Berkeley avoids me a lot.  Carlie has been extra sensitive and cries at the drop of a hat.  My husband is so supportive, he is my rock.
     I have not cried at all this past week.  This is super strange since I am quite a cry-baby.  I have teared up a few times, but I am too tired to have a good cry or I am avoiding it (not sure which one it is).
     This past Saturday was the day I was supposed to shower and see my new body.  I avoided it all day and finally mustered up the strength to do it that night.  I sat on a stool in my bathroom for a VERY long time.....I was too afraid to look.  I also felt horribly nauseous and felt like I was going to pass out.  I kicked my husband out of the bathroom and told him I wanted to do it alone. After I sat in the bathroom alone I told him to come back, that I needed him. I finally did do it with the help of my sweet husband.  It wasn't as bad as I thought it would be, but it is pretty terrible. It didn't feel like I was looking at myself.  I felt removed from my body as if I was looking at someone else. I didn't cry, didn't allow myself to feel anything - just thought I was going to pass out.  I didn't look at myself very long.  I took a quick shower and then I passed out on my bed.
On Wednesday I talked with my surgeon....some of the test results were back.  Here they are:
- All the margins were negative (they cut all of it out)
- He said the mastectomy was the right choice.  He said he couldn't believe how invasive and wide-spread the cancer was.  He can't believe that we couldn't feel the tumor.  He said the tumor on the right side of my breast was 3.5 cm.  He said the DCIS was all over the outer regions of my breast.  He said both tumor regions were invasive.
- They took out 5 lymph nodes (2 of them were sentinel).  There is metastic disease in 2 of them.  This is very bad news.  This means the cancer is spreading beyond my now missing breast.  This part is scary to me.
- He said the tumor did respond the hormones estrogen and progestrone which means I am a candidate for hormone therapy.
- I will be doing chemo for sure.  Not sure what type yet.  They are waiting on the Her-2 results.  The levels of this will determine what type of chemotherapy.
- He said I might have to do radiation too

     I have a follow-up appointment tomorrow with my surgeon.  He said he has copies of all the test results for me and they will set up my first oncology appointment for me where I will find out much more about this crappy road I have found myself on.  I was really hoping that it had not spread to the lymph nodes and that my treatment would be mild, but it looks as if this is not going to be the case.
     Through all my trials in my life I have learned the hard way to not pray for my problems to go away, but to pray for strength to endure them.  I am praying for strength and oh boy I am going to need it.  I like to think of myself as a tough girl who can do anything....but this one is throwing me for a loop.  I am realizing that I can't do it alone. I am kind of angry right now that this is happening and have been trying to avoid the reality of it all.  I have been trying to build up the strength to blog about this all week and I haven't because again I am trying to avoid it.  If I don't think about it or dwell on it then it is not really happening.  So here I am blogging....it is my therapy.  It is making me feel better to process all that I am feeling and all that is happening.

     I need to buy a lot of thank you cards.  Again I am overwhelmed with letters, emails, phone messages, flowers, texts, gifts, banners, cards, care packages, treats, facebook posts/comments, people entertaining my kids, etc.   These gifts; big and small, have been the best medicine.  Thank you so much.....they mean more to me than you can imagine.  I feel loved.
     FYI: I have not felt like having visitors or talking on the phone.  I am slowly coming out of my cave and will start interacting with the world again.  But, until then please do not get your feeling hurt if I have not responded to your message/note/phone call.

 It has been a rough week.  Being faced with my own mortality again is crushing me.  BUT, I saw this quote below today and it spoke to me.  My world might seem to be crumbling, but I am still so blessed.  

I recently was talking to one of my best friends about some of her problems and I told her to say this whenever she is feeling down. "Hey at least my boob isn't being cut off!".  Pretty good advice don't you think?  :)

 Oh and for inquiring minds.....I have lost 8 lbs since my surgery. 

 Not sure how much of that is boob weight, but kinda interesting :)

Love you all - peace out,

The One Boob Wonder

Staying Strong is EXHAUSTING

I was reading a brochure on breast cancer put out by The American Cancer Society.  It talked about how you will deal with breast cancer in your own way.  It said you might feel angry, hurt, confused, scared, tired, or sad. 
I feel TIRED.  I hadn't realized that I felt tired for that reason until I read that.  Then it all made sense.  I am normally a happy, optimistic person who tries to make the best out of things.  I now feel like it is taking an enormous effort on my part to try to remain that optimistic girl.   It is exhausting to be that strong.  But, I still feel it is SUPER important to choose your attitude.  I am also physically tired because I am not sleeping very well at night.  It takes me hours to fall asleep sometimes and then I toss and turn all night.  I am not scared or freaking out, but I think I am anxious and my mind is spinning.  I am also tired because I am having a difficult time with my arthritis right now.  It has been extra hard to motivate myself to do my daily chores and responsibilities too.  oh boy.......
OK - so enough of my complaining.....
I keep reminding myself that it could be way worse.  That my problems are small compared to so many others around the world.  This doesn't make it any less difficult, but it reminds me that I am still a lucky girl and to remember to be grateful for all the great things in my life.

I am grateful that I am able to go on a trip to California for 8 days right before my surgery. (I will get back the night before my surgery)  It will be good for me to focus on having fun with my family and creating memories; instead of feeling sorry for myself and worrying about things too much.

I am grateful that I have lots of supportive friends and family that are willing to sacrifice for me in my time of need.  That they are willing to build me up with kind words, humor, and service.  I appreciate it more than I can adequately express.  It is amazing how much just a sentence or a simple reaching out to me can boost my strength.  

I am grateful that I have a mother and a mother-in-law that are willing to drop everything to come take care of me through this journey.

I am grateful that my sister is organizing a little group to do the breast cancer walk in Salt Lake City on October 13th.  They are calling themselves Team Awesomeness.  Go to this site if you would like more information, or to join the team, or to donate to the American Cancer Society in the team's name.
http://main.acsevents.org/site/TR?fr_id=47444&pg=team&team_id=1272706
They are either going to put "Supporting the One Boob Wonder" or "Stop Killer Boobs" on their t-shirts.  I think both slogans are great and they make me smile.  I am not sure which one they ended up picking.......

I am grateful that two of my sister-in-laws took me out for a last fun girl's night before my challenges start.  That was very sweet of them to take me out for some good times.

I am grateful that I married a kind-hearted husband who supports me in all my decisions and loves me unconditionally.  He is also having a very hard time with this, but he has been staying strong for me.

And of course I am grateful for my BEAUTIFUL children that can make me smile even on the worst of days.  Thinking about and fulfilling their needs is a very helpful diversion for me.

So, this past week I met with my breast care coordinator and she told me an overwhelming amount of information.
-  My surgery is officially scheduled for Thursday, October 18th.  I am having a simple/complete right breast mastectomy and a sentinel node biopsy.  I will find out on October 16th what my check-in time will be.  My surgery will be about 2 1/2 hours long. 
- I will have two drains that I will have to empty and track the amount of fluid being drained.  She taught me what to do if one rips out.  She taught me how to know when they are ready to be taken out at the doctor's office.  It is sounding like a most unpleasant job.
- I will stay over-night in the hospital.
- I will take the bandages off on Saturday, October 20th.  That will be a hard day....not sure how I feel about this.
- She gave me a seat belt pillow and an underarm pillow.
- She gave me a camisole with a soft breast insert (I don't think it is big enough - maybe I need two).   The camisole also has pockets for my drains. I will not be able to wear a prosthesis for 6-8 weeks until the scar heals.
- She talked me through everything that would happen on my surgery day - nothing too earth shattering in that since I have already endured 12 surgeries - I am a PRO!
- They want me up and moving around a few days after surgery.  She told me that I can request occupational & physical therapy & scar therapy if I want.
- She gave me a bunch of places that specialize in mastectomy bras and prostheses.  I am not too optimistic on finding something that will not make me feel extremely lopsided.
- She gave me more reading material....kinda overwhelming.
- My follow up appointment with the surgeon will be October 30th.  They should have all the pathology reports in by then.
- I will be referred to oncology immediately to figure out my treatment plan.  I already have an oncologist so I will keep the same one.
- She told me I should go see some plastic surgeons for a consult appointment during treatment.  She said women find this to be a fun appointment because if helps you see the light at the end of the tunnel while you are struggling through treatment.
- She told me so much stuff I do not remember it all.  She was really kind and helpful.  I really like her, but I feel like I am on overload.

I also pre-registered at the hospital for my surgery this past week.  I also got a chest x-ray & blood work done.  I have all my pre-surgery stuff done.  It still does not feel real that this is happening to me though.  This is not like any surgery or health problem I have had before.  This is the hardest one yet and it has just begun.

So please, keep praying and sending me lots of good & powerful vibes.