Historic Opportunity

Did you know that six out of 10 deaths globally come from diseases you can't catch like cancer? And that we can prevent millions of these deaths with tools we already have?

This September, world leaders are meeting for a historic UN Summit on cancer and other non-communicable diseases. I just signed onto LIVESTRONG's open letter calling on world leaders to make the world's top killers a top priority.

Will you add your name as well?

http://www.LIVESTRONG.org/SignOn

If we can get 100,000 signatures before the summit, LIVESTRONG willhand-deliver the letter to the UN Secretary General and key Heads of State.   Thanks!

Interesting article

I read this interesting article in today's New York Times.    Most of it rang true for me except for his thoughts on "My thoughts and prayers are with you."    That did not bother me at all.

Good riddance June 11, 2010 - June 10, 2011

Recently, I was reflecting on the last year and realized how truly awful it has been.

On June 11, 2010, my cousin Cathy lost her brutal 6 month battle with melanoma. Cathy and I were just 2 months apart in age. We did not grow up near each other (she in Chicago and me in NY), but we always had so much fun when together for family events. She left behind a husband, 3 children, 2 parents, 3 siblings, and many other family members. Her death hit me really hard, which coupled with the stress of moving back to the US, made for a really rough few months for me. I am still so MAD and sad that cancer took her so young.

In August, Craig's great aunt Louise passed away. Her death was not quite so difficult to accept since she died about a week short of her 103rd birthday. Both of Craig's grandmother's died before he was born and Louise never had children so she was like the grandmother of the family. She was a really lovely woman who always asked about my parents whenever we saw her, even though she only met them once or twice.

Then, there was January 14,2011... My own cancer diagnosis. March 4, 2011... My bilateral mastectomy. Two days I will never forget.

On May 1, 2011 we lost Craig's "Uncle" George. Technically, he was Craig's first cousin once
removed since George was Craig's Mom's cousin. George and Craig's Mom were both only children. George never married and never had children. We were his only family. He was never in the greatest of health, but his death did come as a shock. He had just turned 73 on April 14.

And to close out this crappy year, my friend Anna was diagnosed with breast cancer in late
May.

Here's to a "new" year filled with more happy events than sad ones!

The unveiling

On Sunday, I was able to take off my bandages and take a shower. It was the first time I got to see my new boobs. After the expanders, I was expecting them to look and feel different. I will admit I was a bit disappointed, which I have heard is a common reaction. They felt really firm at first, almost as firm as the expanders, which I had referred to as the coconuts. Now, almost a week later, they have softened up a lot and feel more like breasts should feel. That has made me very happy. I am still getting used to what they look like. They are still bruised and the magic marker "no pressure" writing is still there so that is not helping. There are veins protruding where there did not used to be and the shape is not exactly what I expected. It is hard to explain but they are wider and a bit flatter than I expected. I know it will take a while for everything to "settle" and there is the potential for future "touch up" surgeries. I am going to try and not think about that now. I am going to enjoy the summer and be thankful I was able to do this surgery so much earlier than we thought I would.

I am feeling pretty good today, better then yesterday. I am definitely not as tired as I was earlier in the week and have just a little bit of soreness in my tummy area but I am not even taking Tylenol anymore. I am going to drive for the first time today the get the kids from school since my Dad headed home last night. HUGE thanks to both our dads for being here over the last week!!!

Insurance companies are so funny

I got a letter from my insurance company today that they are unable to "substantiate the medical necessity" of surgery I had last Friday. Hopefully the doctor's office will get this all worked out with Cigna. I am sure they will, but it gave me a good laugh today.

I am feeling okay. My stomach is still sore and I am exhausted despite sleeping pretty well at night. It has been nice having the kids at school today so I can rest without having to keep them from killing each other!

Swap-out surgery

We set off for the hospital at about 8:15am because I had to be there at 9am. Traffic was kind of a nightmare so I was getting nervous about being late. Luckily, we arrived right at 9am. Of course I should not have been worried since things generally run late at MMH. They finally took me into pre-op around 9:30 9:45. I was in pre-op for almost 2 hours. Getting my IV put in was not pleasant. He tried the left side first but it did not work so he had to switch to the right. I have a nice looking bruise on the left since he fished around a bit trying to get the needle in.

Craig was able to come in and keep me company for about an hour, which was nice. Finally around 11:30 the OR team started arriving - the OR nurse, the anesthesiologist (Dr. M) and my plastic surgeon (Dr. G). Dr. M and I had a little chat about anti-nausea meds in with the anesthesia due to my terrible experience in March. He thinks my nausea was due more to the pain medication since I did not get sick until the morning after the surgery. He promised to load me up with anti-nausea meds during the surgery and so far so good. Dr. G was very happy I had Dr. M as he is Dr. G's favorite anesthesiologist. In fact Dr. M is who Dr. G would choose to be his anesthesiologist. That made me quite happy.

Dr. G, Craig and I talked about the surgery and how I wanted to look and be size-wise. He had pictures of my pre-mastectomy breasts, which were kind of weird to see. I had not realized how droopy I was after breast-feeding 2 kids. Once I am all healed and the scars fade I will look different and better. The one benefit of this whole mess!!

At 11:45, i headed for the OR, about 45 minutes late. Better than last time when I was 2.5 hours late! They got me on the operating table and next thing I knew it was 2:45 and I was in recovery! I was sore but the pain was not unbearable. I guess I had already had a very coherent conversation with Dr. Gin recovery but I have no memory of it!!! I had the shakes for little while which was annoying but they bundled me up with warm blankets and they finally went a way.

At about 3:30 they moved me over to second stage recovery and got me sitting up in a chair. I got to have some juice and Graham crackers which hit the spot since I had not eaten all day! Towards the end of my time in the first recovery room, I started feeling like my hands were both asleep. I told the nurse in second stage recovery and she was a bit concerned about it. She initially thought my bandages were too tight but that did not seem to be the issue. She called Dr. G who was in the OR with my breast surgeon doing a mastectomy and reconstruction on a woman similar in age to me. Dr. G was not at all worried. For the surgery my hands were stretched our straight to my sides. He even had me sitting up for a while. I think he brought in a few different implants to try for size and volume. He expected that the feeling could last for a few days and not to worry. (the feeling is gone as of Saturday morning.)

After a little while they brought Craig and his Dad in. It was nice to see them. Ray left a 4:45 to get the kids at school. Craig and set off a little after 5pm. We were home just before 6pm.

I hung out in the recliner for the evening, being waited on hand and foot. I did have to keep reminding Craig about the whole "in sickness and in health" clause in our wedding vows. :). The pain is not too bad. Since my breasts are numb, they don't hurt at all. As part of the procedure took some fat from my belly to inject above my breast to create a better transition from my upper chest to the breast. (I told him to take as much fat as he wanted even if he threw some away! I can't tell if he did since everything is swollen.). My belly button area and where he injected the fat are quite sore. I need to be careful not to apply pressure to the injection are. Dr. G literally wrote "no pressure" across this area in black magic marker! I chuckle when I sneak a peak under my tube top bandage and saw the words.

All in all, the surgery went great! I am sore and tired but not nauseous. I also don't have ant drains this time so I hope to be back on my feet by the middle part of next week. Dr g called last night at about 8:00 and was very impressed by how good I sounded. I think was expecting worse given how I was after the mastectomy, which was 3 months ago today!

Swap-out surgery done and dusted!

I am home and feeling pretty good, considering I had surgery today. I'll post more in a day or 2. I am SOOOO happy it is over!

June 3

Four years ago today on June 3, 2007, Raymond, Craig, Sam and I (and a lot of suitcases) set of on a huge adventure - three years of living in Finland.   We were very excited and a bit scared.    The next three years WERE an amazing adventure full of funny stories of living in another country, travel all over Europe and most importantly, making new friends (who I still miss every single day!).   

Today, I am a lot scared and a bit excited about the next step in my reconstruction.  I am worried about how I will handle the anesthesia this time and how we'll handle my recovery and lifting restrictions with much less help than after my mastectomy.   I am excited to get rid of the expanders and really feel like we are moving on with life.   My scars can heal and start to fade.     Unfortunately, I continue to live with a more profound fear of cancer - recurrence of the breast cancer and new cancers that are related to breast cancer.  I try not to let this cloud my days but it will always be with me.  

(For those of you who have been praying for my friend, Anna, I have excellent news to report.   Her lymph nodes came back clean.  Her surgeon was almost sure there would be cancer and had told Anna so the day before her surgery.   Thanks for all the prayers - they are working!!)

Another June 3 milestone - 17 years ago today I started at Coopers & Lybrand, now known as PricewaterhouseCoopers or PwC.     17 years....     I realized this weekend that I turn 40 next year.   EEK!!!!

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.

This is NOT an April Fool's joke!!!

I heard from the oncologist's office today. My doctor is out but I talked to her assistant who had the Oncotype results. I scored a 6 which equates to a 5% chance of recurrence with no future therapy (chemo or hormone). According to the assistant this is extremely low and she is 99% sure that I WON'T NEED CHEMO!!! I'll find out for 100% sure when I talk to the oncologist on Monday but when we met with her last week, her "no chemo" scenario involved a 10% recurrence rate so I am thinking 5% is even better. Can you tell I am an accountant? ;). So for now, I am crying tears if joy and feeling extremely blessed that everything since the original diagnosis has gone "right" for me. Thank you for all your prayers, good vibes, positive thoughts, etc. I like to believe that they helped!

Next steps:
-meet with the oncologist to talk about hormone therapy (tamoxifen)
-call plastic surgeon's office to figure out how soon I can get rid of these expanders. I did not do the expansion this week so I still need at least one of those before I can get my final implants.
-figure out when I will go back to work
-plan a long weekend for just Craig and me to get away and recharge after all this craziness
-plan lots of fun activities for our family for the summer we just got back
-drink lots of wine to celebrate tonight. I guess that should have been first!!!

Waiting and final HER2 results

I called the oncologist's office today to see if she had heard any test results.

On the good news front, we know once and for all that both tumors are HER2-.

On the no news front, no Oncotype results are back yet. The breast surgeon is the doctor that technically ordered the test, so the results will go there first. Her office knows to send the results immediately to the oncologist. I really wish the sample had been sent for testi g right after my survey since we would know by now but there is nothing I can do to change things now. there is some confusion as to when the lab actually started the testing, which can take 10 or more days. They called me last week to tell me insurance had approved the test and they were just waiting for the sample but the breast surgeon's office thinks maybe the approval just came through. The oncologist office told me to call back on Friday if I have not heard from them yet. I just want to know so we can figure out my chemo schedule so we can plan out the next 5 months! (I have a Type A personality - I have a compulsive need to plan!). So we continue to wait!

I am supposed to have my second expansion tomorrow but i think I will have to cancel the appointment because Emily is running a fever and will be coming home from daycare as soon as she wakes up from her nap. She will then be home for at least tomorrow and probably Thursday too since her fevers typically last more than 1 day. We went a whole month with no sick days for her which might be a record since last Fall. Of all the months for her to be healthy, March 2011 was that month so I am thankful for that. Hopefully, with Spring coming, there will be fewer viruses floating around!

Monday, Monday

Three weeks ago today, I returned home after 3 nights in the hospital after my surgery.    With each Monday that has passed since then, I wake up each morning feeling MUCH better than I did the day before.   It is really odd that Monday is such a magical day, especially since the weekends are more exhausting than weekdays with the kids home to entertain.   Next Monday, I expect to start chemo so my Monday feeling better might come to an end!

I started driving yesterday, so I was able to get out of the house by myself today which was nice - a Reiki appointment at the hospital, Walmart and CVS.   Thrilling stuff!     I spent the rest of the day finishing the Twilight book series.   Thanks to Micah for the suggestion!    I actually like reading on the iPad more than I thought I would.   Next up is Northanger Abbey by Jane Austen which was recommended by my cousin Kara and friend Trang.

Not much else to report.   Still waiting for the Oncotype results, praying for a very low score so maybe I won't be starting chemo next week.  I need to call the oncologist tomorrow to check in and see if she has heard anything.    I have been inhaling water since my appointment with her last week, which I have termed "Operation Hydration."   I am trying to drink 96oz of water a day so my veins are prominent enough to avoid getting a port for chemo.   I don't think my veins look any better but it does not help that it is still so bloody cold here - temperatures hovering around freezing every day for the last week.    We might hit the 50s this week - woohoo!  I have had enough of winter.  Somehow it is unseasonably warm in Florida (in the 90s) and unseasonably cold here.    I hope Spring comes soon!

Mom

Mom is headed to the airport for her flight to Orlando after spending the last 3 weeks with us.  She leaves behind some lovely New Jersey "spring" weather - almost a foot of snow between a small storm on Monday and a bigger storm yesterday and overnight (which resulted in no school yesterday and a delayed opening today).    I know she is looking forward to getting back to her husband and her much quieter life.    I am not going to lie, our house can be really loud at times, mostly because of the 2-year-old girl child!  ;)

I am SO blessed to have a mother who was willing and able to give up a month of her life, including a week in January right after the diagnosis, to be here for us.   She was my shoulder to cry on, my nurse to deal with all the yucky post-biopsy and surgery stuff, my chauffeur, my masseuse, our chef, our laundry-doer, etc.  She made sure Sam was fed and had water.   She packed lunches and took the kids to and from school.   She told me to rest when I needed it.   She played with the kids.   I am sure I am leaving many things out.   She has always been an incredibly supportive mother but this went above and beyond the call of duty.    I really am so lucky to have her in my life and I love her so very much. 

I miss her already!

Final pathology report and unexpected visit with my breast surgeon

I now have a copy of my final pathology report from the surgery and can now confirm the following:

• There were 2 primary tumors (not 3 or 4 as we originally feared) measuring 2.0cm and 1.1cm.  The tumors were 1.5cm apart and in the same quadrant of my breast, not different as originally thought.
• Once again, the pathologist only tested the HER2 status on 1 tumor, arguing that the tumors were so close together they would have the same characteristics.   The medical oncologist did not like this line of thinking and is making the pathologist do the test over.  Dr.E gets things done and does not care who she pisses off in the process!
• Margins were clear/negative - 1.0cm to the chest wall (which is a HUGE margin) and 0.6cm to the skin.

Based on the above, my cancer is Stage IA!  :)

When we stopped at the breast surgeon's office to get a copy of the report and to make my follow up appointment and my breast surgeon happened to be in the office between surgeries.  It was nice to see her and she asked if I wanted to "flash her" so she quickly examined me.   She literally winced when she saw how "full" I was from the expansion.  She was happy with how everything is healing (as was the plastic surgeon).    We decided I did not need to come back for a formal follow-up appointment, which was nice.  

There had been some disagreement between Craig/my Mom and I about the breast surgeon's thoughts on my lymph nodes going into the surgery.   I thought she was not worried until she got in there and saw them but Craig/Mom thought she was worried there would be lymph node involvement before she even started the surgery.   Turns out Craig/Mom were right.   She did think the cancer had spread to the lymph nodes but never let on, which I appreciate!    She also was worried during the surgery she could not get clean margins to the skin so was happy to see the pathology results.   I am happy I went with the "meticulous" surgeon as she worked her butt off to get me these awesome results!

I don't have to see her again until a month after the implants are done.  At that point, she'll teach me how to do self-exams, since I do still have breast tissue left in my chest.  Then, I will see here annually.  I am so happy that the Breast Center referred me to her on January 14 and I told her so yesterday.   She has been such a wonderful doctor and person in literally my darkest days.   I am kind of sad that I won't see her again for a few months!

Medical Oncologist appointment

Yesterday, after the expansion appointment, we headed to the hospital to meet with the to talk about next steps.   I was really dreading this appointment as I am still in the surgery recovery stage and not looking forward to the chemo phase and its related side effects.  

The oncologist opens the appointment by saying something like, "If we can avoid chemotherapy for you, that is my goal."   At that point, I said, "Thank you very much" and tried to walk out the door.    Unfortunately, in my post-expansion pain, I definitely could not outrun her (or even Emily) so we all laughed and started talking about chemo.

First up, they will run the Oncotype DX test on my removed tissue. This test predicts the likelihood of recurrence in the next 10 years.   It comes up with a score and a percentage.   If the percentage is 10% or less (give or take a few percentage points), chemo would not be necessary as hormone therapy (tamoxifen) will do enough to lower my recurrence chances to a livable percentage (6%-ish).   We are PRAYING for a low score on this test.    Unfortunately, the oncologist does not think I will be so lucky - she thinks I will fall more in the mid-range of scores.  (According to her, she is pretty good at guessing where people will fall with only a few exceptions.)  In this case, she would recommend chemo for some and not others.    Given my age and the fact that I had 2 tumors (and therefore some really messed up DNA in my right breast), she would recommend chemo for me.

Then our conversation turned to the type of chemo.   Previously, she recommended a pretty aggressive regimen - cytoxan, taxotere and adriamycin - given together for 6 cycles, every 3 weeks.   When we got the great pathology results from the surgery, I was all prepared to go in and fight her to tone down the chemo regimen.  I am all about being aggressive and making sure this NEVER comes back but I don't want to needlessly kill myself with chemo for no reason.   Luckily, I did not have to fight her at all.

The chemo regimen she is proposing is cytoxan and taxotere for 4 cycles, every three weeks.   Common side effects are hair loss (a certainty in 3-6 weeks), nausea and vomiting (manageable with drugs) and fatigue (which I just need to trudge through).    She is very supportive of my staying out of work for the duration of my treatment so I can focus on feeling my best.  (I am lucky to work for a company where this is possible.)   She would want to get started it the next 2 weeks - so the week of 4/4 or 4/11.    Even with starting the week of 4/11, I think I will have JUST enough time to swap out my expanders for implants and heal before our Disney trip at the end of the summer.  That would be OUTSTANDING!     While I am obviously not happy about having chemo, this is the best scenario from a regimen perspective so I left the appointment much more positive than I thought I would.

Given that there will likely only be 4 cycles, I am leaning towards not getting a port.    The oncologist looked at my veins and I guess I am really dehydrated so I need to plump myself with water if I want to avoid the port.  She told me the chemo nurses would not be happy if I walked in for a treatment with my veins!   So, now I need to drink a TON of water for the next 2 weeks and WOW her at my next appointment!

The Oncotype DX test takes 10 days if she rushes it, which she has, so hopefully we'll know next week.   We (and the oncologist) are a little annoyed the slides were not sent for the test right after the surgery since we would have the results by now, but oh well...  it gives me more time to recover from surgery before starting chemo.

The oncologist also agreed with the breast surgeon that there is no need for me to see a radiation oncologist so radiation is OFFICIALLY off the table.  Woohoo!!!!

First expansion

I saw the plastic surgeon today for the first expansion of the tissue expanders I have in preparation for the insertion of the implants later this year. Luckily, he was able to expand me a lot during the actual surgery so I should not need many additional expansions. Good thing, because today was NOT a pleasant experience. He had told me the actual expansion would be easy but I would be sore after. The actual expansion was quite unpleasant and now I feel like I have basketballs glued to my chest, rather than softballs. After the expansion of the first side, I got incredibly dizzy and thought I was going to pass out. This is not the first time this has happened to me during a medical procedure but it s definitely my worst incident. Then, he had to do the second side which made me feel even worse. I basically just laid there taking deep breaths for a while, with a cold compress on my head and a garbage can next to me. Luckily, I got myself calmed down before I needed the can! Somehow, I tolerated the sentinel node biopsy dye injection so well and nearly lost it with this. Very unexpected! It is going to take a lot for me to do another expansion...

I had to recover kind of quickly so we could get to the appointment with the oncologist on time. That went really well and I will provide an update on that later. The Valium I took is kicking in and I need to rest...

Cleaner!

I took my first post-drain shower today and I feel cleaner than I have felt in 2 weeks.  I actually used shampoo, TWICE, and conditioner.    I was able to use soap on most of my body.  (I am still avoiding the healing incisions.)    It felt wonderful and I could have stayed in there for hours!     My mean mother would not let me put deoderant on until the doctor approves it so I will probably be stinky again in hours but it is nice to be clean for now!   

Everything seems to be healing well and I am feeling pretty good.  I still get tired by the end of the day and am definitely sore but I am down to just Tylenol during the day and Advil at night, so I feel like that is an improvement.   I still am not ready to drive and not sure when I will feel ready to.   My chest area and arms are still so tight that I worry about my reaction time.   Luckily we have Mom here until next Thursday so chauffeur me around!

It is a beautiful day in NJ - our first taste of Spring.   I think it is currently warmer outside than it is in the house!     Of course, the temps are supposed to go back down into the 50s for the weekend, but I'll enjoy today while it lasts!

I am DRAIN-FREE!!!!!!!

One of my drains was not operating as it was supposed to this morning so I called the plastic surgeon's office to find out what to do about it.   Since they were not putting out much and I was scheduled to have the last 2 taken out tomorrow, they told me to just come in today for the removal.   It feels AWESOME to have them gone.   I can't shower for at least 24 hours, so Friday I plan to take the longest shower of my entire life.   It was impossible to get myself really clean with those things in and I am not going to lie, I don't smell very good and my hair is scary but by Friday mid-morning, I will be a whole new woman!   Hurray for the little things in life!

Pathology Results are In :) :) :)

My breast surgeon called a little while ago with GREAT news about my final pathology results:

• NO cancer in the left side
• Lymph nodes on both sides are totally CLEAR
• NEGATIVE (or clear) margins in the right side which should mean no radiation
• Invasive tumors (cancer broke through duct wall) were 2-ish and 1.1cm in size with evidence of DCIS (ductal carcinoma in situ - additional cancer that had not yet broken through the duct wall) in the right side

I am not entirely sure on the exact size of the bigger tumor - it was somewhere between 2.0 and 2.2.   I cannot remember what she said as Emily had just found some bubbles that she wanted me to blow for her as the surgeon called...    As a result, I am also not clear on what the exact Stage is - either I or IIA - but it does not really matter to me.   (2.0cm is a delineation between stages.)    We'll talk to the medical oncologist next week about the chemo cocktail and I'll get a copy of the pathology report for my cancer binder.

Two months ago today I found out I had breast cancer - the worst day of my life.   I won't say today is one of the best days of my life since I still, you know, had cancer, but I think it is the best day since January 14th!!!

Thank you SO MUCH for all the prayers and good wishes over the last 2 months!!!!

2 drains gone!

I saw the plastic surgeon this afternoon for a quick follow up visit. He says I look "great" and he was able to take out 2 of the 4 drains - of course not the 2 drains that are bothering me the most but it does feel great to have 2 of them gone!!! He said I am so close to being drain-free that I was able to make an appointment for this Thursday where hopefully he can take out the other 2 rather than having to wait until Monday. I would be beyond happy to get rid of these things by the weekend. No more hiding them under bulky clothes AND I would finally be able to sleep on my side. Ahhhhh, nirvana! It is amazing what you get excited about after a bilateral mastectomy! :)

I am feeling so much better today - the best I have felt since before the surgery but the visit to the doctor did kind of wear me out so I am going to nap before the kiddies get home!

The hospital stay

My surgery finally wrapped up late Friday night - maybe 10:30ish?    Craig and Mom saw the breast surgeon when she was done at 9ish and learned the good news about the clear lymph nodes.    Turns out the surgeon was worried that there would be cancer in the nodes when she first got in there because they were "hard" or something like that AND she had to call the pathologist back in because she identified a few more nodes on my right side (along the rib cage rather than under my armpit) that she wanted tested.    In all, I lost 5 nodes on the right side and 2 on the left.    Not bad at all!    She also was able to save my left nipple because no evidence of cancer was shown in that part of the tissue.   (I knew going into the surgery that the right one would be removed due to the location of the tumors.)   A while later when the plastic surgeon was done, he went to see Craig and Mom to let them know his part of the surgery had gone well too.

I was in recovery for a while.   I remember the final time I woke up, as I am sure I had probably been in and out a few times before I really woke up.    The first thing I said was "ouch."    I was a tad bit sore.     I kept trying to get the attention of the nurses wandering around and when I did, my next word was "family."  I really wanted to see Craig and Mom.    They came in not long after and it was so great to see them.   I was so happy the surgery was done.    The time flew by for me :)  not so much for them!    They finally wheeled me up to my room at around 1am.   Luckily I was in my own room!  It was tiny but no roommate.    

The weekend is kind of a blur.    My plastic surgeon was not lying when he told me the recovery from this kind of surgery was painful but I had lots of meds for the first day - morphine, valium, zofran (anti-nausea because my system did not like the anesthesia and/or morphine) and others, I am sure.   I was REALLY loopy that first day - I would be talking and then all of the sudden stop because I had no idea what I was talking about and neither did the other people in the room.   It was a bit scary to me but normal, I guess.   My vision was also blurry for a little while - I could read a sign across the room with no issues but had trouble reading stuff on my Blackberry.    That cleared up after a while.  

Day 2 (Sunday) was really rough.    They shut off the morphine pump because the plastic surgeon thought that was partially responsible for the nausea but no one really explained to me that (1) pain medication would only be given on an "as needed" basis and (2) what kind of medication was available to me.    I basically got behind in the pain management and the nurse and nurses aides were not particularly helpful or sympathetic.   By mid-afternoon, I wanted to talk to my plastic surgeon because of the pain and something else I was worried about and the nurse really did not want to call him, telling me he'd check in that evening and they would talk to him them.   My Mom went all "Mother Hen" on her and the nurse finally called him.  (Thank God for my Mom!!)   Within 2 minutes, my cell phone rang and it was the plastic surgeon.    He totally talked me down from the ledge and asked me if they had been given me any valium (which helps relax the muscles along with its other function) which they had not so he told me I should have some.    I could not completely tell but I think he was a bit annoyed with the nursing staff.   He did not seem at all annoyed with me that I insisted on talking to him.   (I could hear his 16-month-old daughter in the background.)   Have I mentioned how much I LOVE my plastic surgeon?    

Things got a little better from there but I could not wait to get the hell out of the hospital.   My advice to anyone having surgery - try to have it during the week.   The nurse I had for just the few hours I was in the hospital on Monday morning was AMAZING!    Nice and caring and attentive.   (My weekend overnight nurse was very nice but I did not see him much since I was sleeping for most of that time.)    My other advice is make sure (with a competent other adult in the room who is not in pain) that you completely understand what medications they are automatically giving you, what meds are available, what they are for and how often you can take them.   Don't let yourself get behind in the pain because it really sucks to try and get caught up!!!

After the plastic and breast surgeons both cleared me, we headed home.   They kids were at daycare so I had time to get comfortable and nap before they came home.  It felt great to be home and taken care of by Craig and my Mom.   No more waiting for pain meds.   The service was quick and kind!  ;)    It was great to see the kids on Monday night although the flurry of activity was a bit exhausting.  

On Tuesday, a visiting nurse came by the check me out and all was good except I was still having stomach issues with the pain medication (vicodin).   I decided to stop taking it and just take advil and tylenol for the pain and the valium to relax the muscles.   At this point,  I only take the valium overnight as it makes me a bit tired during the day.   I am definitely still quite sore especially because I have these 4 drains that get the post-surgical fluid out of my body.   They are incredibly annoying to hide and cause some major soreness where they come out of my skin.   I hope to get rid of 2 of them when I see the plastic surgeon on Monday and the other 2 a week later.  

I must say the recovery has been harder than I thought it would be.    It hurts and I am tired but I am CANCER-FREE so it is worth every ache and pain I have and continue to go through!   Each day really is better and better.   Yesterday I even walked to the end of the driveway to get the mail - my first venture outside the house.   It was thrilling!   :)   After 2 days of horrible rain, it was nice to get some fresh air!

The surgery

I cannot believe it was a week ago that I was passing the time, waiting to go to the hospital for my "4pm" surgery.   I am starting to feel like a semi-human again, so I am ready to recount the events of the day.

The posse (Craig, Mom, Dad, Aunt Patty) and I headed to the hospital for our planned 12:30pm arrival.   That is about the ONLY thing that was on time all day.    We waited until almost 2pm before they finally took me into the pre-surgical area.    I was supposed to be at nuclear medicine at 2pm for my radioactive dye injection so I was a bit nervous that things were already late.   I had to go into the pre-op area by myself (with the nurse, of course) and it was a bit overwhelming.    I felt really, really alone.  (I had just read in one of my cancer books that morning that there are times in your journey when you really are on your own and that was one of those times.)  

My assigned nurse was Conny, a 15 year breast cancer survivor.    She was so nice and caring and exactly the person I needed at that moment.    She was a little confused at first when looking at my file.  She started by asking me what I had already had done up to that point.  I was not sure how to answer the question so I told her the plastic surgeon had marked me up the night before.    She was still confused so she asked me basically what I was there for.     I was a little unsettled by the question but I told her a bilateral mastectomy with tissue expander reconstruction.    It turned out that she only had the paperwork from my plastic surgeon (so the reconstruction) but nothing from the breast surgeon (so the actual mastectomy).    We had a chuckle over that and she went off to find the complete paperwork.  Once she had that, she asked me the standard medical questions, got my IV in and rushed me off to nuclear medicine since I was already 45 minutes late.

The dye injection was SO much easier than I had thought it would be.  I am not sure if I just had a really good surgeon who did it or I had let my imagination run wild.    It was not the most comfortable injection but totally bearable.    The surgeon looked a bit like Grizzly Adams - maybe that distracted me!  ;)    I had to wait there for a while until the dye made its way to the nodes so the surgeon could find them with the scanner and then mark their placement with an "X" on my skin.   Pretty high tech!  :)

Then it was back to pre-op to wait and wait and wait...    Unfortunately, Craig had left by the time I got back there because he had to take Raymond to golf class so I was bummed I did not get to see him but my mom and dad kept me company, until dad had to leave to take care of the kids so Craig could come back.    We saw my breast surgeon at around 4pm (my surgery time) and found out she still had 1 more procedure before me.    (The first surgery of the day in my OR had run late or started late so they whole schedule was off.)      So we just kept waiting as more and more people got taken for their procedures.     At the end, there were only 2 or 3 other people in pre-op and they all seemed to be people who had come from the ER - no other scheduled surgeries.  

I was feeling a bit impatient and frustrated.   I had my "cheering crowd" all ready for the 4pm start and now it was nearly 6pm.    I felt like no one was thinking about me anymore - I know not true but you are not exactly rational while waiting for major cancer-related surgery.     The man in the pre-op area right next to me was in for some hand surgery after an injury at work.    To confirm they have the right person, doctors and nurses are always asking for your name and date of birth.   His date of birth was June 11, which is the day my cousin Cathy lost her battle with melanoma in 2010.   I immediately knew I was not alone and it was the most comforting feeling.  I knew my angel cousin (and everyone else she was hanging out with in heaven that night) were right there beside me.

At some point, my plastic surgeon and breast surgeon came by to make the final determination on how to do the surgery.    The night before the plastic surgeon had done 2 mark-ups on my chest so he could get the breast surgeon's advice.   The prodded and squished and pulled at me (nicely apologizing the whole time) and made their decision.    I am pretty sure the way they did it made the breast surgeon's job a bit more difficult but will result in a better cosmetic outcome.     I am SO happy I went with my breast/plastic surgeon pair.  It was so clear that they work well together and respect each other as physicians.    Friday was the first time I had ever seen them together.

Not long after that the anesthesiologist came by the introduce himself and gave me something fun that calmed me down even more  :)    and then they took me into the OR at almost 6:30pm!    I was not awake for long in there but I remember a lot of activity from everyone except my breast surgeon.   She stood right next to me, holding my hand and stroking my arm until I fell asleep.   It really helped put me at ease.  And then I was out!

To be continued...

Clean(ish)

I took my first shower in a week which felt nice. It is not easy to get really clean with the mobility restrictions and bandages and stuff, but it felt nice to just stand under the warm water. I am SO happy I chopped my hair pre-surgery because the new do is incredibly easy to style.

After the shower, I passed out in the laz-y-boy for a little snooze. It took a lot out of me!

Slow recovery

It is great to be home and my recovery is progressing slowly - definitely more slowly than I would like but I guess I did have pretty major surgery less than a week ago. I am trying to wean myself off the harsher drugs so that I am not so tired (and weepy).

We are still waiting on the final pathology report which hopefully will come back on Friday or Monday. Then we will know definitively about whether or not I will need radiation. The breast surgeon is hopeful with the lack of lymph node involvement that hopefully the chemo regiminem won't have to be quite to aggressive. she is unsure about radiation but did her best to get clean margins.

Each day is a bit better than the last and I am sleeping ok, which is great. Will update more someday. I have plenty of free time over the next few weeks! :)

Home sweet home

I made it. Feeing much better than yesterday but still in rough shape, as expected. Loved the nurse I had this morning and wish she had been there all weekend. More at some point later this week.

Day 2 post surgery

Had kind of a rough day. I'm still pretty sore. Still hoping to go home tomorrow. Thanks for all the emails and blog comments, they really mean a lot to me. Hope to give more of an update tomorrow.

Day 1 Post-Surgery

Just wanted to let everyone that I am okay. Pretty weak and uncomfortable and acting really loopy The drugs are helping but my affected muscles feel like they have been all stretched out, as expected!

I'll try do a longer post tomorrow or Monday, once I am a little bit back back to my normal self from a mental capacity perspective.

Thanks again for beeing part of my cheering crowd. I Felt your presence me.

Out of surgery

Amanda is out of surgery.  Everything went fine.  Good news is that the lymph nodes came back clear.  Other than the surgery starting 2.5hrs late, all went fine.  I'm off to bed - more in the morning - Craig.

Time to kick a little cancer ass...

Twenty-seven months ago today, on December 4, 2008, Craig and I woke up early and headed to Naistenklinikka ("Women's Hospital") in Helsinki for my last surgery - the c-section that welcomed Emily into the world.  I have a feeling that c-sections are a way more fun "surgery" than a bilateral mastectomy but I am ready for this to be done and dusted.    I am ready to be cancer free and an official breast cancer survivor.   I am ready to move on to the "maintenance phase" of my treatment plan - chemo.    I still cannot believe this is happening but Craig's funny attempts to Jim Bakker-style "HEAL" me have not worked so I guess we have to go the surgical route.  :)

We have to be at the hospital at 12:30pm ET and I have my radioactive dye injection at 2:00pm ET for the sentinel node biopsy.   The surgery is scheduled for 4:00pm ET but the plastic surgeon warned me it could start later than that.    The surgery will be 4-5 hours.   Craig will post an update when he can after the surgery but it likely will not be until quite late, after they have seen me in recovery and driven home.    But I promise he will post something at some point.

Thank you for all the cheering so far.   I will see all of you in the OR as I close my eyes and go to sleep!

The highest praise

I met with my plastic surgeon tonight so he could mark me up for the surgery tomorrow.   He likes to do it the night before since surgery day is generally very rushed.    He has not completely decided the best way to do the reconstruction in order to get the best cosmetic results (something about excess skin after nursing 2 kids and my recent 20 lb weight loss).   Anyway, I look like one of Emily's art projects but I trust the doctor.    (He'll decide the best approach in consultation with the breast surgeon tomorrow.)

As I was leaving the appointment, the plastic surgeon told me something that has made it clear in my mind that I picked the right breast surgeon.    His mother-in-law was recently diagnosed with a breast cancer recurrence.   She lives near my Dad in NY and since the plastic surgeon did a fellowship at Memorial Sloan-Kettering he has access to ANY of the best breast surgeon's in the area.    He chose MY breast surgeon to do his mother-in-law's surgery.  I am not sure there could be higher praise for her!    I feel a lot more relaxed having that knowledge. 

Spiritual alignment

I have had a very spiritual morning - both from a religious and a "new age" perspective.   First thing this morning I went to 8am Mass and had a chance to talk to the pastor, Fr. Dan Murphy afterwards.   I love Fr. Dan.   We share a last name and went to the same college, Holy Cross.   We have a connection.  This was the first time since my diagnosis that I was able to tell him about what is going on.   I wanted to ask him to pray for me tomorrow and he of course agreed to.  He also performed the sacrament of the sick (or anointing of the sick).    According to Wikipedia, "Anointing of the Sick is one of the seven Sacraments recognized by the Catholic Church, and is associated with not only bodily healing but also forgiveness of sins."     So I am on the road to health AND have been forgiven of my sins.   Great start to the day!

Then I had an appointment at the hospital for reiki - "a hands on healing technique designed to create balance and harmony in the body."     It focuses on your "chakras" and the practitioner places hands on you in various positions.    It was a little new age-y for me but I was very relaxed afterwards!

In 24 hours, I will be at the hospital!

Cancer 'do

So, I have needed a haircut for a while - since probably December but then January happened and life took a little detour.   I finally made an appointment for this week in my quest to get my life as tightened up as possible before the surgery.   Kind of like "nesting" before you have a baby but for a WAY less fun reason!  

Back to the hair...   Since I am going to lose all of it in April anyway, I decided to do something a little different.  I did not have any ideas before I went for the appointment so I talked to my stylist and told her what was going on.   She brought out some books and we picked a hairstyle.   It is definitely different and will be very easy to take care of through the surgery and recovery!

Before...

 After...

An assignment for all of you

Last week I met with the oncology social worker at the hospital and she gave me a guided imagery CD, "Meditations to Promote Successful Surgery."     The creator is a woman by the name of "Bellaruth Naparstek."    Doesn't she sound like someone that would narrate a guided imagery CD???   She has the most soothing voice!   Anyway, studies have shown that listening to this CD will help speed up healing after surgery so I am giving it a try. 

At the start of the recording, I am supposed to picture myself in a special healing place.  My place is the overwater bungalow where Craig and I stayed in Bora Bora on our honeymoon - beautiful and very relaxing.   While picturing myself there, I am transported to my operating room.   While there, I see my "cheering section"watching over and protecting me during the surgery.    YOU are my cheering section so I need your help on Friday.    I'll be headed to the hospital at around 12pm EST.   Please start thinking about me then and then try to really focus positive energy at around 3:30pm as I enter final preparations for the surgery at 4:00pm.   I guess there have been studies of people (mostly heart patients) who knew there were people praying for and thinking about them during their surgery.   They did better than those who did not know people were people praying for and thinking about them during their surgery.     The surgery is expected to last 4-5 hours so keep the positive energy going whenever you think of it.  (For my friends in Finland, try to have some good dreams about me!   I don't expect you to stay up all night!)

Thanks for all your support and comments!    In approximately 72 hours, I will be cancer free!!!

Emily update

Emily appears to be on the mend.  Fever finally broke yesterday morning so she was back at daycare today.   The amoxicillin seems to be doing the trick!

Now there is a stomach virus going around daycare, so hopefully both kids avoid that!

HER2 results

My surgeon called today.   She has been away on vacation skiing all week.   I was VERY happy to hear from her as I now know she did not in any way injure herself while skiing and is ready to perform my surgery on Friday!    Anyway, she called with the additional pathology test the hospital performed on my tumors.  GOOD NEWS...   all tumors have come back HER2- so everything is plain vanilla estrogen/progesterone+ breast cancer.  This is what we wanted!

Emily is still sick.   She got an antibiotic prescription yesterday as one of her ears looks infected and we are still waiting for it to kick in.  I have a lot to accomplish this week and I really don't want to have a 2-year-old assistant.  I tend to move a little slower with her in tow!

Dear God...

I am perfectly okay with Emily having a fever of 103.3 THIS Friday if it means she will be COMPLETELY HEALTHY for AT LEAST a week starting on March 4th.

Thank you,
Amanda

My name

In Latin, my name is the gerundive of the verb amo, "to love" and literally means "must be loved" or "worthy of love."    Today in the mail, I received a card from an old friend, Jen, an "OSAAT" necklace from my friend, Julie, and a package from my cousin-in-law, Mike which containted Cathy's wig, one of her favorite headscarves, some cancer books and candy.   I feel VERY loved today - one week before the big surgery.   I am a very lucky girl in many ways...  and a bit unlucky in one big way! ;)

Goodbye to work (for now)

Today was my last day in the office before surgery.    I am taking a few days off next week in order to go to last minute appointments and to get our life in order (or as much as I can do so).  And let's face it, I have not been exactly productive for the last 6 weeks!  

I consider myself extremely lucky to work where I do.   First of all, everyone both Craig and I work with have been incredibly understanding and accommodating to us.   Craig has been at every appointment I have needed him to go to and he will be able to take time for and after my surgery.    The group of people with whom I work most closely is a group of 9 - 8 women and 1 lone man (poor Patrick)!    I am the third to be diagnosed with breast cancer in the last 2 years.    One other tested positive for the BRCA genetic mutation and had an elective bilateral mastectomy last year.   CRAZY!    Needless to say, my group has been incredibly supportive and I leave work knowing they will cover for me as long as I need them to and my job will be waiting for me when I return.   The group is scattered all over the country and we happened to have an in-person meeting in January in NJ.   The gave me this incredible basket of goodies - books, lollipops, fuzzy socks for the hospital, organic treats, etc.

Food!

Back in December, a mom at Raymond's elementary school started the "REACH Committee."   I cannot remember what the acronym stands for but the purpose of the group is to provide meals to families in the community in need due to medical or other issues.    I signed up as a volunteer and before I was able to cook my first meal, I found I was in need of the group's help.   The mom that started it is a breast cancer survivor.   There are 2 other members who are also breast cancer survivors (which makes a grand total of 4 women in my general neighborhood who have had breast cancer in their 30s/40s - CRAZY).   

A few weeks ago, I reached out to the organizer to ask for help and yesterday she sent out an email for 2 nights a week through the month of March.    All the spots were filled within 30 minutes.   I sent out a note thanking everyone for the rapid response and got so many emails back with words of encouragement and additional offers for help - with the kids, rides, etc.    I have really been blown away by all these people who don't even know us who are going out of their way to help.

Additionally, friends from PwC (along with some other local friends) have been asking to help so they are providing 1 meal a week through the end of March.   They also have been offering help with the kids, groceries, etc.    Again, overwhelming, in a good way!    (Thanks a TON to Jen for organizing!!!)

(We'll be deciding on meals for April and beyond once my chemo schedule is set and gets going.)

The fact that we are still relatively new to the area and do not have a huge support network locally has been worrying me since my diagnosis.   Since I went back to work when we returned from Finland, it has been really hard to make the time to meet people and cultivate relationships.   You need to be friends with someone before you can ignore them for a little while and still have them consider you a friend!  ;)     The outpouring of support has been really inspiring and has helped me feel like we are not so alone.

A first

Last night, Craig was able to put Emily to bed with me in the house for the first time ever!!! We have tried a few times recently and she would let him get her ready for bed and read stories but when it came to getting her in the crib, I always had to help. Last night we were off routine though because we had gone to a friend's house for dinner and did not get home until just after 9PM. Emily was wide awake when we got home as she sang loudly for the entire ride home. Luckily she was with Craig and I had quiet Raymond and Sam with me. Let's hope this is the start of a new trend for Emily and she will be better about letting Craig put her to bed once I am home from the hospital!

Book recommendations (available on Kindle)?

My Aunt Patty sent me an Amazon gift card to buy some fun stuff for my new iPad.   (She is addicted to her iPad!)    Anyway, I am looking for any book suggestions since I'll have some free time coming up in about 2 weeks.    Something good and not too fluffy but definitely not involving anything overly sad or violent.  (I was thinking the second book in the Stieg Larsson trilogy but I think that will be too violent for me at this point.)    Any suggestions?    It also has to be available through Kindle!

Pre-op visit with the plastic surgeon

Today, we met with the plastic surgeon, mainly for a Q&A session as he did not need to examine me again.   We talked about the prep for the surgery, the surgery itself and some after surgery stuff.    I LOVE my plastic surgeon.  Not only is he an "artist" (according to the oncologist) but he is a genuinely nice person.   He gets how hard this is for me and acknowledges that.    He was not at all fazed by the fact that I might need radiation.   Some plastic surgeon's might be because it makes the reconstruction a bit trickier.   Craig mentioned that my oncologist quickly dismissed the potential for radiation and the plastic surgeon indicated that the oncologist is NOT quick to dismiss things so she must really think I won't need it.   I liked the sound of that!     

So, for overall timeline, assuming I don't need radiation, the tissue expander/implant swap out would happen 4-6 weeks after the end of chemo.   I would then be restricted with lifting for another 4-6 weeks.     Basically, I would have to do this after our planned Disney trip at the end of August because we can't really travel with 2 kids if I cannot lift anything, including carry-on luggage.    Then, 6-12 weeks after that would be the final major phase of the reconstruction (creation of the right nipple).      There might be tune-ups after that to get everything just right but hopefully not much too many.  

Two weeks and 1 day from right now, the surgery should be DONE (or close to being done).    I am totally freaked out by the surgery and recovery but am very much looking forward to not having cancer in my body anymore.   I talked to a co-worker today who is currently in treatment for breast cancer.   She had a sentinel node biopsy related to her lumpectomy and confirmed what I had heard about the injection of the radioactive dye - it is really painful.   I debated not asking her because part of my did not want to know but I asked anyway.    She said the pain does not last long but it does hurt a bunch.   And I have to have the injection in both sides.    It will just be the beginning of months of pain and discomfort.   Cancer SUCKS!

Insurance companies can be unbelievable

I am sure this is not the last time I will utter those words!    I heard back from my surgeon about why only 1 tumor was tested for its estrogen, progesterone and HER2 involvement - because that is all the insurance companies will cover!    That is so crazy because (1) more than person I have heard about with multiple tumors had different involvements in each and (2) the treatment protocols are a bit different based on these results.    The hospital will now (on its own dime) test my other 2 tumors for the HER2 status. 

I also spoke to my surgeon about inserting the port for chemo during my mastectomy and she does not recommend it.   First of all, the port needs to be inserted in the same general area she is working on from a mastectomy perspective.  Secondly, they are already introducing a foreign object into my body with the tissue expanders so better to wait on the second one from an infection perspective.  I'll have the port put in during a second procedure later in March.   I'll be getting a Power Port.    The procedure takes about an hour and happens in the OR.

The last thing we talked about was the recent study that came out about the number of lymph nodes removed after a sentinel node biopsy comes back showing cancer.    The study was based on women who were having a lumpectomy followed by radiation, which is obviously not me.  The study indicated that the survival rates in women having further nodes removed was no different than those having no further nodes removed.   This is great news because removing a lot of lymph nodes is not good for you and can result in lymphadema.   At this point, doctors are trying to decide if the results can be extrapolated to women with mastectomies who are not planning to have radiation.   This will not be decided in the next 2.5 weeks so IF my sentinel node(s) comes back with cancer, she will remove more nodes but not all (as often, the further nodes won't have any cancer in them).  I am still praying the sentinel node(s) come back clear and she won't have a decision to make in the operating room!

One month

One month ago today, I found out I most likely had breast cancer.   The last month seems like an eternity.

New toy

This is my first post from my "I have breast cancer so I *need* an iPad" iPad. I have been resisting this technology but given how much time I will spend in hospitals and doctors offices over the next few months (many of which with free WiFi), I decided to get one. Many thanks to Craig for braving the Apple store the week the iPhone became available through Verizon!!

OSAAT

After Thursday's craziness, my cousin Christine has reminded me of a mantra the her sister/my cousin Cathy tried to live by during her melanoma battle - OSAAT or "One Step at a Time."    I am not so good at this but vow to try and just focus on the surgery for now and leave most of the other stuff for after the surgery, when we have the full pathology and know more.   I know I won't be able to do this all the time, but feel free to remind me if I am getting a little ahead of myself!

On tap for this week:

• Set up a meeting (that hopefully can happen this week) with the Oncology Social Worker at the hospital to get a better understanding of all the programs I have so I can get to a few mind/body programs before the surgery.
• Call the local chapter of the American Cancer Society to see if they have any donated wigs available.
• Meet with the plastic surgeon on Thursday for my pre-surgery appointment.
• Get in touch with the mother at Raymond's elementary school that heads up a committee which provides meals to people who need some help in that department.  (The woman that heads up ths group is a breast cancer survivor.)  I think I'll see if they can bring meals twice per week for the month of March.   Some friends from PwC are also wanting to help so I might see if they can cover 1 night per week giving us 3 dinners per week before leftovers.  This will take some of the cooking burden off my Mom.
• Call the surgeon to see if she has spoken to (1) the pathologist about the biopsy analysis they did of only 1 tumor and (2) the oncologist about implanting the port during my surgery.

I think that is enough for now!

Overwhelmed

Today was a long day - we met with the breast surgeon and the oncologist and came home to a pre-op package from the plastic surgeon's office.   My ability to be in denial about all this was really tested today and I kind of feel like I got kicked in the a$$.    I'm too tired to cover in detail but the highlights (or lowlights) are:

• Radiation is definitely on the table more than I thought as the surgeon is worried the tumors might be too close to the skin to get clean margins.  She hopes she'll be able to get clean margins but wants me to be prepared for the worst.  This could make reconstruction a bit trickier but still totally doable.
• I am definitely having the double mastectomy with sentinel node biopsies of the lymph nodes on both sides (mainly due to the 3 spots that showed up on the left, non-cancer, side in the MRI).    The breast surgeon totally sold me on it today.  She said she does not usually feel strongly about one surgical option over another but feels very strongly in my case - age and cancer all over one breast.   She is confident I will have no regrets and based on some people I have chatted with over the last week or so, I agree.
• 2-3 weeks post-surgery I should be feeling pretty good and be back to "normal" by 6 weeks
• They'll give me lots of good pain meds and valium
• My surgery will be at 4pm on March 4 but I have to be at the hospital at 12:30pm for some prep stuff.
• The likely sentinel node looks a little bigger than it normally should be on the MRI but she thinks this could be in part due to the fact that I had 16 biopsy samples taken a couple of weeks before from that area.  The oncologist also did a lot of feeling under my armpit and could not detect any swollen nodes.
• I will almost certainly have chemo due to my age and the fact that there is cancer all over my right breast.   I will likely have a pretty heavy cocktail every 3 weeks for six cycles.  It will start at the end of March and will go on until mid-July.   The oncologist wants to be aggressive to make sure I live healthy for a very long time.    She also suggested having a port implanted, potentially during the surgery to make future chemo treatments easier on my veins.    (A port is installed under the skin between the breast and the shoulder and provide a line directly into the veins so no needle pricks at each treatment.  Ports themselves are not so much fun so I am not excited about this.)
• Because breast and ovarian cancer are very related, we will talk later about whether or not to remove my ovaries.  (Also, ovaries produce estrogen which fuels my type of cancer.)    That is a post-chemo discussion.   Chemo could put my into menopause (although this is less likely the younger you are).
• When the pathologist did the further studies on my biopsy samples to determine the type of breast cancer, only 1 of the 3 known cancerous sites was tested.   This seemed to surprise but the breast surgeon and oncologist.   It is *possible* that different tumors could have different types.   This kind of freaks me out.    The breast surgeon is going to call the pathologist to figure out why they did that.  It is possible they determined that the samples were substantially the same so no further testing was needed.   Everything will be tested very closely after all the breast tissue is removed in surgery.
• The oncologist wrote me a prescription for a "hair prosthesis" AKA a wig but I found out this afternoon upon calling CIGNA that these are not covered under my plan so I will have to pay for it out of pocket if I want one.   
• I cannot eat or drink ANYTHING after midnight on the day of my surgery.  I am sure I will be totally nauseous anyway but I can't even drink water.  
• The oncologist referred to my plastic surgeon as an "artist" and to my breast surgeon as "meticulous."   VERY glad to hear that!
• We really like the oncologist - direct and to the point but very personable and nice.
• Assuming I do not need radiation, the oncologist thinks we will definitely be able to go to Disney at the end of August - a trip we had already started planning.  That is going to be my light at the end of the very long and dark tunnel.

That is all I can make out of my notes.    Keep the blog comments and emails coming as I have gone back to a little bit of a dark place and could use some good vibes and happy thoughts.  I know I will get through this but it really is going to suck!

Oh and a couple of more prayers for my brother-in-law's father would be appreciated.    He has taken a turn for the worse and could use some good vibes and happy thoughts of his own.
 

"How is she REALLY doing?"

I know Craig has gotten this question and I am sure others of you are thinking it so I will answer...    Right now, I am doing okay.   For the 2 or so weeks following January 14, when my surgeon answered "Yes" to the question, "Do you think I have cancer?" I alternated between being okay and being a complete mess.   

When you are first told you have cancer, your mind (or at least my mind) begins racing.    You imagine all of the possibilities of what will happen to you - surgery, treatments, pain, death, etc.    When you don't have all the facts or really any facts beyond "cancer" it is easy to get lost in all the really bad thoughts.   And I definitely did that.  I would watch Craig playing with the kids and would think, "what if I am not here in a year?"   I would have to leave the room because I did not want the kids to see me crying.    Those were really dark days and so many people who have gone through this before me have told me those first few weeks are the absolute worst part of the whole process.   At this point, I am starting to believe them.

After those first few weeks with so much uncertainty, we started getting more information - it is the "good" kind of breast cancer, it does not look like there are any metasteses, and the lymph nodes look good on an MRI.    There are a lot of proven treatments my doctors can turn to for my cancer and I likely will go on to live a very long life.   Yes, there is always the chance for recurrence at some point but I am comfortable that I will be doing everything I can in the next few years to significantly reduce that likelihood.

Honestly, I still cannot freaking believe I have cancer.   Denial is a great thing at times.  I mean, I "know: I have cancer and I am doing all the right things to deal with it but until the surgery on March 4, this won't seem totally real to me.   Kind of like being pregnant with your first kid - you don't really get it until your child is born.   (Accepting that reality, I believe, will have been a hell of a lot more fun than this one.)

So, I am okay.   We have at least the beginning of our plan and we are moving forward.    I like plans and lists and checking things off lists.   It helps me feel like I am accomplishing something to get rid of this evil thing in my body.

Tomorrow - appointments with the surgeon and an oncologist!

Chinese fortune cookie

We got Chinese food for dinner tonight because the whole chicken I had taken out was not fully defrosted and the bag with the innards broke, leaving half the bag and innards frozen inside the chicken.   I'll try again tomorrow night.   Anyway, my fortune cookie reads:

"Although it feels like a roller coaster now, life will calm down."

I am counting the days until that happens...

The latest ultrasound

This morning, I had to go over to the Cancer Center at the hospital for a follow-up ultrasound based on the MRI findings.   The MRI noted the following items:

• Right side
• 1.9cm mass at 6-7:00 - previously biopsied, known to be cancer.  This is the lump I found.
• 1.4cm mass at 7:00 - previously biopsied, known to be cancer.  
• 8mm mass at 5:00 - previously biopsied, known to be cancer.  
• 9mm mass at 9:00 - previously biopsied, not cancer.  
• 6mm nodule at 3:00 - new and looks like cancer.
• Left side
• 7mm nodule at 9:00 - new
• 6mm nodule at 3:00 - new
• 5mm nodule at 6:00 - new

(And just to clarify, "new" means items that showed up on last Tuesday's MRI that were not seen on my original mammogram and ultrasound on January 14.)

The ultrasound today was to look at the 4 new items.   The technician could not find any of them, which is not surprising since a 1cm mass is the size of a peanut.    I saw the radiologist and her thoughts were:

• Do nothing about the nodule in the right breast since I have to have a mastectomy anyway.
• Do an MRI biopsy of the nodules on the left side.   I asked her if this was necessary in the event I have a double mastectomy.   She asked who my surgeon was and upon telling her that, she thinks Dr. LG won't want it biopsied.  They'll just look at it after surgery.   I'll discuss with Dr. LG later this week.

Overall, I kind of feel like this was a waste of time and maybe I should have waited to talk to Dr. LG before scheduling it but what's done is done!

On tap for later this week (Thursday) are appointments with the breast surgeon and an oncologist.

We shared my diagnosis with our 5-year-old sone yesterday and he took it pretty well in that he really does not get what all this means and his biggest concern was whether or not I could still be the referee for his soccer game in the basement with Daddy yesterday afternoon.  ;)    He was very cute for the rest of the day and seemed to be taking extra special care of me.    He asked if he could tell his 2-year-old sister about my limitations after my hospital stay, to which I replied "Yes."   He went up to her and said something like, "Mommy won't be able to pick you up after she goes to the hospital, okay?"    He is such a good little boy!

Recap of where we stand

I have gotten some questions about exactly where we stand and what the plans are so I figured I would provide an update on the blog.   I am providing a fair amount of info which might be a little too much information for some people.  Consider yourself warned!

I have estrogen and progesterone positive breast cancer in my right breast.    There are at least 3 separate cancerous spots and potentially a fourth.  We do not know the size of any of them (or at least no one has told us).   It does not appear that the cancer has metasticized elsewhere in my body.   The first place the cancer would go is into the lymph node closest to the tumors and per the MRI it does not appear it has spread to there but we will not know for certain until after my surgery.     The MRI did show some nodules in my left breast which I will have looked at on Monday morning via ultrasound.  I am not sure if they will have to be biopsied at this point.

On Friday, March 4, I will have surgery at Morristown Memorial Hospital.  The surgery will either be a single or double mastectomy with the first step of reconstruction at the same time.  (The single versus double is a decision for me to make at this point, as the left side is not technically "required" from a medical perspective.)  There will be 2 surgeons in the room - my breast surgeon (Dr. LG) and my plastic surgeon (Dr. BG).   The breast surgeon will remove all my breast tissue (including one or both nipples) and will do a sentinel node biopsy on one or both sides where they test the lymph node closest to the tumors for signs of cancer.   The test is done in the operating room.   If that node comes back negative, they will not remove any more nodes.  If it comes back positive, they will remove more.   The goal is to remove as few lymph nodes as possible to avoid potential lymphadema. 

Once Dr. LG is done, the plastic surgeon moves in to reconstruct my breasts.    Initially, he will insert tissue expanders which will be expanded over the coming weeks to slowly stretch my skin in order to be able to replace the expanders with implants in the size I want (my current size).   The expanders are needed because I will lose some skin during the mastectomy (I assume mostly because of the nipple removal).    The expanders (which feel like "softballs glued to your chest" according to a friend) have to stay in until 1 month after chemo ends.  (More on that below.)   I expect to have them in until the end of the summer which totally sucks since they are uncomfortable.   They will look like normal breasts in clothing but they make sleep difficult.

Based on what Dr. LG has said (and the surgeon at Memorial Sloan-Kettering), I will need to have chemotherapy after the surgery.   Type and duration is completely unknown and I probably will not know anything until after the surgery, although I will ask when we meet the medical oncologist, Dr. E, next week.  The biopsy only took a small amount of tissue for analysis.   The mastectomy will result in all (we hope) of the cancerous tissue so more extensive tests can be done.   If I have chemo, it would start about a month after surgery and I expect it to last 2-4 months (or potentially more). 

With the mastectomy, radiation is unlikely unless there is lymph node involvement or they can't get "clean margins" because the tumors are too close to the chest wall.    No surgeon has said anything about radiation so I am hoping and assuming I will not need it.

I think that is everything.  

Oh and thanks again for all the blog comments, emails and phone calls.   It is nice to know I am not alone on this crappy journey!

Second opinion, unofficial MRI results and surgery scheduled

Today we headed to Memorial Sloan-Kettering (MSK) for our second opinion appointment with a breast surgeon there who was recommended by a doctor colleague of our neighbor (who is a doctor himself).    If I did not like my current surgeon so much (who also comes highly recommended), I would definitely go with the MSK surgeon.   She was actually a bit similar to my current surgeon - very to the point in her opinions but in a caring way.   Although the MRI report is not yet available, she looked at the films I brought and shared the following:

• There is another spot in my right breast that has not been biospsied that looks similar to the other cancerous spots. 
• It does not appear that there is lymph node involvement but we won't know for certain until they do the sentinel node biopsy in the operating room.   I still consider this VERY good news.
• There are 3 "nodules" in my left breast.   An MRI is super sensitive and often picks up other stuff that is not cancer.   There is a low likelihood that they are anything to worry about but there might be more biopsies in my future.  

Based on the fact that there are multiple cancerous spots in my right breast, she concurs that a mastectomy is my only option (versus lumpectomy).   Medically, she does not believe I need a double mastectomy (assuming, of course, that the 3 nodules in the left side are nothing).   The likelihood of my developing cancer in the left breast later is quite small but she understands when women do a double mastectomy for their peace of mind and/or cosmetic reasons.   She has given me some things to think about and discuss with my current surgeon.  

I got a call from the plastic surgeon's office today and my surgery has been scheduled for Friday, March 4.   It will begin sometime in the late afternoon (between 3pm and 5pm).   I am happy to have a date on my calendar to we can start planning but it makes it all just a little bit more real.

So now, we wait to get the official MRI report from Morristown Hospital and prepare for our appointments next Thursday with the surgeon and medical oncologist.  (On a side note, I mentioned to the MSK surgeon which oncologist we were seeing and got rave reviews.)   If I decide to move forward with the double mastectomy, I will ask that we avoid doing anymore biopsies.   The only reason to do it, in my opinion, is to potentially avoid having to remove and test any lymph nodes on the left side.