Next step in my reconstruction

On Friday, I will have surgery to swap out my expanders for my implants, or my "more real fake boobs" as I have been referring to them.     Craig and I refer to my expander-filled breasts as "the coconuts" because the shape resembles that of a coconut bra. They are really unnatural looking and are uncomfortable when the kids bump into them (or I bump them into something).    I am dreading the whole surgery aspect of this, mostly the anesthesia and recovery but I am excited to see what my body/breasts will look like going forward.    I am also excited to stop wearing sports bras.  I have not been allowed to wear bras with underwire since my mastectomy.   Since my size and shape now is not what it will be once I have the implants, I have not wanted to invest in any nice non-underwire bras.  A lot of my work clothes are not conducive to sports bras!  I have to wear sports bras for the first 3 weeks after this surgery but then I can go back to regular ones.   

The surgery itself is scheduled for 11:00am.   I have to be at the hospital at 9:00am.    The surgery will take about 2 hours and then I will be in recovery for 2-3 hours.   Craig's Dad is coming down to help and will likely be my ride to and from the hospital so Craig can get Raymond to a number of activities that are happening the same day (Field Day at school, T-ball Fan Appreciation night, swimming lesson). 

This may or may not be the last step in my reconstruction.   Once the implants are in and settled, I might need some adjustments to get everything even.    Breast reconstruction is as much an art as it is a science.  There is only so much the surgeon can do in one procedure.    Also, there is the matter of recreating a nipple on my right breast.   I am undecided about whether I will have that done.   If I do, it will not be until the Fall at the earliest.   I plan to enjoy the rest of my summer!

My friend Anna goes in for her mastectomy in a matter of hours.  Please say a prayer that they get clean margins and the lymph nodes are clear!

Again???

I am not sure if anyone is reading this anymore. I have been ignoring the blog since I returned to work a month ago.    Life has gotten back to its usual craziness, which has been great!     I have a prayer/happy thought/positive vibe request for anyone out there.

My friend Anna, an American living in Finland and a loyal blog follower and commenter during my recent battle was diagnosed with breast cancer 2 days ago.    Since getting the news yesterday, I have been so MAD.   How can this be happening to another 30-something mother???   Anna and I are the same age.   She also has 2 children - 2 girls, aged 3 and 8 months.     Her 3 year old and Emily were in the same baby group in Finland.   Anna has a friend in Finland who was diagnosed the same day as me - January 14, 2011.   Her friend is also our age.    I really want to know what the hell is going on?    Here are 3 women in their late 30s, who grew up in different parts of the world (Finland, NY and California) all getting breast cancer.   The one thing we have in common is a 3 year old child. 

Anyway, please say a prayer for Anna. She is having a single mastectomy next Tuesday.   After that, they will decide on additional treatment.    To all my friends in Finland, please give Anna a HUGE hug from me the next time you see her.  I wish I could be closer and help her.  I now understand how you all felt this winter when you could not be here for me on a daily basis.    But I know how much the support from afar helped and I will do what I can from here for Anna.

Three months ago today...

was pretty much the WORST day of my life.   The next 2 weeks of uncertainty were pretty awful as well and I spent a lot of time thinking about my own mortality, something most of us can ignore in our daily lives.   Cancer happens to "someone else."    Since those first dark days, I have been extremely lucky.   Every single piece of news since then has been good - the "good" type of breast cancer, no metastases, no lymph node involvement, clean margins, no radiation and no chemo.    Along the way though, I lost my sense of invincibility and I faced my own mortality.    That is something no 38-year-old woman should have to face.  I also lost my breasts - a body part of which I was quite fond.  Yes, they were a bit droopy but they provided nourishment for Raymond for 5 months and Emily for a year.   They were not too big and not too small.   I am left now with 2 mounds of flesh filled with tissue expanders with almost no feeling other than around the edges.   I literally bump into things with them and don't really notice, until my brain picks up a feeling of pressure in my chest area.    My hand brushes up against them and it takes my brain a minute to realize I am touching my own body part.   It is really bizarre and upsetting to me.   I might get some feeling back but it will never be the same.   But that (and the scars) will be my daily reminder that I had cancer and I KICKED ITS A$$!   :)

Second and final expansion

I was finally able to have my second expansion with the plastic surgeon today.    We decided this would be my final one since I am happy size-wise after the first expansion.  (You need to do one more expansion after you achieve the right size.)    This expansion went SO much better than the last one.   He did he fill a lot slower, I was seated in a reclined position, Craig was in the room and we were chatting the whole time.  I did not feel dizzy at all and no nausea.  I don't even have the overly full feeling I had last time.    My plastic surgeon thinks my reaction was due in part to what else was happening the day of my first appointment - an appointment with the oncologist to talk about chemo.   When I saw the plastic surgeon that day, I thought we would be establishing my chemo schedule with the oncologist right after.   It was an emotional day. 

In any event, today was easy and I am happy not to have anymore expansions.   We just heard from the plastic surgeon's office and they have confirmed my surgery will be on Friday, June 3 - my light at the end of my tissue expander tunnel!   I have to have general anesthesia again which I am not so excited about but I will deal.

I am allowed to start lifting but need to be careful not to overdo it, since I am likely weaker after the 6 week break.    If something does not feel good, I need to stop doing it.   I am also allowed to shave my armpits.  According to Craig, I am looking a little Eastern European these days.   (Turns out I could have started shaving a few weeks ago but I kept forgetting to ask.)

Starting Tamoxifen

We met with the oncologist yesterday to talk about the next step in my treatment plan with chemo off the table.   I was still worried about whether or not we were making the right decision about chemo based on some stuff I saw online about the Oncotype results being an "average" risk of recurrence but how a younger woman's risk could be much higher.   (Craig tells me I need to stay off the internet!)   Anyway, I brought this up with Dr. E (who was described as one of the more aggressive doctors in her practice) and she feels very strongly that we are making the right decision.    If I did have chemo and there was some sort of complication which landed me in the hospital, she would in no way be able to support giving me the chemo in the first place.   I feel better now and I am totally convinced we have made the right decision.  I got a copy of the Oncotype results and the 5% risk is after 5 years of Tamoxifen.  Chemo would only lower that to 4%.  I can live with 5%!

She wrote my prescription for Tamoxifen which can have the following side effects:

• hot flashes
• vaginal discharge
• vaginal irritation/dryness
• mood swings, which can lead to depression - Craig is in charge of looking out for this one because I won't even realize it.    I already have mood swings according to Craig, so he has a hard job!  ;)
• weight gain, up to 10 lbs - SO not happy about this one after my recent 20 lb weight loss, esp because I have put a few pounds on in the last few weeks.  I need to get back to watching what I eat and stop snacking.  That will get easier when I am back at work and not home all day!
• blood clots and stroke - less than 1% chance of this
• uterine lining issues which could lead to uterine cancer - less than 1% chance of this

Tamoxifen will NOT put me into menopause although my menstrual cycle might get messed up, more due to the stress of what I have gone through rather than the Tamoxifen.    I have to be VERY careful not to get pregnant while on Tamoxifen.    The label comments that pregnant women should not even handle Tamoxifen pills - the dust from it is very dangerous, even to inhale it.   (This is totally fine with us since the 2 children we have are enough for us.    Well, I am fine with it most of the time.   I know we don't want anymore kids but it pisses me off that cancer has taken away any possibility of another child.   I wish it were just our decision.)

Whatever side effects I will have should start at the 3-6 month mark.  I'll see her in 8 weeks for my first follow-up appointment.  She did examine me yesterday and says everything looks good and I am healing well.   She might send me for some physical therapy after I get my implants to make sure I get all my range of motion back in my shoulder area.  It has gotten way better but I am still stiff.

In case you are curious about Tamoxifen and how it works...  it is a SERM or Selective Estrogen Receptor Modulator.  My specific type of cancer cells have a protein to which estrogen will bind and cause the cell to replicate.   The Tamoxifen will bind to these receptors but not allow them to replicate.   There is not room for estrogen to bind to the cells with the Tamoxifen there.   Therefore, the cancer cells are eventually killed off by my immune system.    I will likely take it for at least 5 years but there are other drugs I might switch to which we will discuss later.

We quickly discussed whether or not I should have my ovaries removed.  She wants to wait before doing anything about my ovaries since ovary removal causes sudden and rather harsh menopause.  I am okay with avoiding that for now.

For now, she said to get back to living my life and to do the following:

• eat a diet low in fat (which I generally do)
• get some exercise (which I need to be better about)
• try to live a lower stress life (which I also need to be better about)
• get an annual physical (which I always do, except for our 3 years in Finland)

As for future cancer risks, there have been links shown between breast, ovarian, uterine and colon cancer.   There are no real screening tools for ovarian and uterine cancer but I maybe should get a baseline pelvic ultrasound in the near term (to be discussed with my gynecologist in July).   As for the colon, she would  not recommend a colonoscopy now but maybe a few years earlier than normal - say 45-ish.    My breast surgeon will teach me how to do self-exams on my new breasts after I have the implants as I do still have some breast tissue left.  I WILL be good about doing those self-exams unlike my prior history of never having done them.

So, for now, I consider myself to have won the cancer lottery.   My cancer was very non-aggressive and was caught very early. Yes, I still had cancer and had to face all the uncertainty and worry up front but now I can get back to living life.   There will always be that worry in the back of my mind about recurrence but I will do my best to keep that voice quiet and far away!

Tomorrow, I have my hopefully final expansion with the plastic surgeon.    Wish me luck as I am hoping not to repeat my performance at the first expansion three weeks ago!

National Young Adult Cancer Awareness Week - April 3-9

National Young Adult Cancer Awareness Week (April 3-9), first launched in 2003, is designed to share little known information about young adults with cancer. This year, a series of video public service announcements reveals that:

• Approximately 70,000 young adults in their teens through their late 30s are diagnosed with cancer each year in the United States.
• Cancer is the leading killer of people 20 to 39 years of age, behind homicide and suicide.
• Over the last 20 years, overall survival rates in young adults with cancer have reached a plateau.
• Young adults have the lowest participation rate in clinical trials of any age group.
• Young adults face unique psychosocial concerns  such as fertility preservation, body image, sexuality, education, insurance  issues, employment reintegration, and long term effects of treatment.
• Young adults get cancers that are different than pediatric patients and older adult patients.

For all my young friends out there, please CHECK YOURSELF:  your skin, your testicles, and your breasts.  Get an annual pap smear.   Ask your doctor if the HPV vaccine would benefit you. Get an annual check-up.  Don't smoke.   Get to know your body.   Don't ignore unusual symptoms.   And for those of you women who are turning 40 this year or are in your 40s, get a mammogram and let me know about it.   I have loved hearing from those of you that did not put it off because of what happened to me. 

This concludes today's public service announcement!  ;)

CONFIRMED - No chemo!!!!

I spoke to my oncologist about 30 minutes ago and she confirmed that I do not need chemotherapy!   My recurrence rate would only decrease from 5% to 4% - so the "costs" of chemo (side effects, toll on my body, etc.) far outweigh that benefit.    So now, I need to schedule an appointment with her to talk about starting Tamoxifen and what my future monitoring plan is.  

Craig and I celebrated on Friday night - I had 2 Miller Lites and could definitely feel their effects!   I have always been a lightweight, but more so now since I have barely had anything to drink for 6 weeks.   I cried pretty much every time I told anyone about the "no chemo" this weekend - tears of joy and relief and thanks.

Hard to believe that 1 month ago right now I was arriving at the hospital for my surgery, which would not start for 6 more hours!    I feel pretty good.  My arm mobility is coming back.    It seems much better today than yesterday - the power of Monday!    I think most of my discomfort is expander related.    I'll get rid of those at the end of May, hopefully.    They can be swapped out 6 weeks after my last expansion which hopefully is next Wednesday.