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. 

MRI Done and Dusted!

My breast MRI was today and it was about a million times easier than I was expecting!  It was quite loud and the relaxing CD I brought did not do much since I could not hear it over the banging but luckily I was able to relax on my own.    I also took a Xanax but I am not sure I really needed that either.   It went by really fast - each banging session was between 1 and 10 minutes.  I had to stay still for each session but it helped break it up into manageable chunks.   I don't think I was in the MRI machine for more than 30 minutes.   I hope everything I still need to face is easier than I think it will be.    We should have the results in the next 2 days.   I am hoping there aren't any more spots in the right side than the 3 we know about and none in the left.

(FYI - This entry's title "Done and Dusted" was a phrase I picked up from my cousin, Cathy.   She used it a bunch whenever she finished up a big test or procedure in her melanoma battle.   I draw on her strength on a daily basis.)

On an unrelated note, while I was in for the MRI, my father's father-in-law passed away after his own battle with cancer.   He had been going downhill for a while so his passing is a bit of a blessing but still a huge loss for my father's wife and her family.    Please keep John in your prayers!

Finally, my brother-in-law's father is not doing well and was rushed to the hospital early this morning after a seizure at home.  Please pray for Bucky as well!