ESCAPE TO SILICONE MOUNTAINS...

Dear friends and family,
     Welcome to my blog!  David came up with the name.  We are trying to keep things light and positive, which he happens to be very very good at.  I feel so technologically advanced to have created a blog of my very own!  But, actually, it was pretty easy.  I decided that a blog would be a good way for me to journal and share my story without imposing myself on my friends and family with group emails.  This way, you can look at the blog whenever you wish, and write to me if you want.  It feels good to write about what I am going through.  And this is easier than repeating my story.  It is still hard for me to say out loud that I have cancer.  It is difficult to even write it without starting to feel emotional. 

     I thought that the easiest way to start would be to copy and paste the last week of email messages, so forgive me if you have already read these.  The only thing I want to add is a bit of history before the initial diagnosis was made.  When I think about how I presented, the diagnosis is so blaringly obvious.  I can't believe I was surprised at the biopsy result.  I am amazed at the power of denial.

     I hope that this is not too graphic to write, but many of my friends want to know how I found the cancer.  It was not through a routine mammogram or by feeling a lump.  I noticed a little brown stain inside of my bra.  Of course, I thought that I had dropped a semi-sweet morsel inside of my shirt and inside of my bra.  Weird, but whatever.  Then, I noticed a different bra with the same stain and thought...Hmmm, could I have dropped a blueberry inside this bra?  That seemed far fetched.  So, I examined myself and was able to express dark brown fluid from my right nipple and thought, uh-oh.  I know that usually, brown (bloody) nipple discharge is from a benign tumor which can grow inside of the milk duct and can bleed.  Still, it requires an evaluation.  I had just talked to Sylvia Campbell (my breast surgeon) about a mutual patient a few days before I noticed the blood.  So, I called her and asked her to see me for this.  She saw me the next day, and ordered a mammogram and ultrasound.  I don't want to bore you with the details, but I had these tests, plus a breast MRI, then another ultrasound and then a second opinion about the studies.  This went on for several weeks. The upshot is that my breasts are extremely dense (they don't look dense, in fact look pretty droopy!) and difficult to image.  There were several areas in each breast which were suspicious and areas that I would need to follow up MRI in 6 months to make sure they were stable, but we decided just to focus on the bleeding.  So, next step was an outpatient duct excision (or open excisional breast biopsy) which I had on Fri, June 21.  I was totally expecting that this was caused by a benign papilloma.  Even though, I knew it was possible that my symptoms were due to cancer, I completely convinced myself and my family and my friends that this was nothing, and not to worry.   In fact, I did not even tell many people about the procedure because I really wasn't worried.  Then got the news on Tuesday, June 25.  And, in one quick blow, my entire life changed and would never be the same.  Very dramatic, right?  But, it's true.  Somehow all of the errands that I did that day, as I usually do, running around like a crazy person, seemed pretty meaningless.  I was sitting in Dr. Campbell's office, the last patient of the day at 4:30pm.  They called me the day before and asked that I come in to receive my pathology results in person and check on my incision.  BTW, red flag for the doctors reading this, right?  David smelled a rat, but did not want to make me nervous.  I STILL wasn't worried until I was sitting there waiting to be seen on that Tuesday afternoon.  I thought, OMG, am I about to receive bad results?? 

OK, now we are up to the first email that I wrote when I found out my diagnosis:



On Tue, Jun 25, 2013 at 9:11 PM, Lauri Hochberg <lauri.hochberg@gmail.com> wrote:

Dear friends,

 

I am sorry to email this but I don't have the energy to call each of you and I don't want to talk about this any more tonight.  I met with the breast surgeon today and found out that my pathology results are not good.  I have a very early breast cancer called ductal carcinoma in situ.  I am going to need a mastectomy of at least the right breast.  I will not need chemo or radiation.  I am meeting with an oncologist tomorrow and will have the BRCA test to see if I have the gene which predisposes me to breast cancer.  If so, I will need a double mastectomy because my risk for breast cancer in the future in the other breast will be so high.  I will also meet with a plastic surgeon to discuss reconstruction. 

 

I am thinking about/leaning towards doing a double mastectomy mostly because my breasts are so difficult to image and I am afraid that I will worry so much about the left one forever.  If I remove both breasts, my chance for cure is excellent, 99%. 

 

So, the woman who was never going to do a breast augmentation is now going to have beautiful fake perky boobs forever! 

 

I feel so lucky that this cancer revealed its ugly face to me and I am being diagnosed so early.  I know that near future is going to be rocky, but am confident that I will live to be an old grouchy lady. 

 

This is not a secret, so it is ok to share with our close friends.  I included all of you as you have been directly involved and are all asking/waiting for results with me.  I know that I will be fine, but I will need to lean on you in the coming weeks.  Feel free to call/email/text or whatever you want.  I just can't talk any more tonight.

 

Love,

Lauri

 

PS  I am meeting with doctors this week, but still will go to camp on Sunday.  Will be good to get away and be in the woods/trailer for a while.  Surgery will probably be next month sometime.

 On Wed, Jun 26, 2013 at 10:20 PM, Lauri Hochberg <lauri.hochberg@gmail.com> wrote:

first of all, thank you for all of the emails/phonecalls/text messages.  I feel like there is a big giant hug forming all around me.  I definitely feel the love, so thank you for that. 

Quick update for today:  I saw the oncologist, Dr. Chris George, this afternoon.  He drew some blood for the BRCA test, which I will have back in about 10days.  Dr. George also recommends a right mastectomy due to the location of the tumor.  If the BRCA test is positive, then I have a 85% chance of recurrent breast cancer in the left breast.  So, really a no-brainer to have both breasts removed.  If the BRCA test is negative, then there is a 0.7% chance per year for breast cancer to develop in the remaining left breast.  Since I am so young, I probably have a lifetime risk of 35% for breast cancer in the left breast.  If the tumor is estrogen receptor positive, then I can take a medicine called Tamoxifen, which will reduce that risk to 17%.  

I am going to think it over, but am still leaning toward removing both.  The remaining breast will be difficult to image and I will most likely be looking at lots of mammograms, probably more biopsies, etc.  I'd like to reduce my risk to as close to zero as possible.  

I am meeting with the plastic surgeon tomorrow to discuss reconstruction.

That is the update.  I feel like I am on an emotional rollercoaster.  Going from sadness, to being ok, to still not believing this is really real.  

Love you guys,

More info tomorrow.

 On Fri, Jun 28, 2013 at 7:16 AM, Lauri Hochberg <lauri.hochberg@gmail.com> wrote:

Hello friends and family,

I added a few more to this list so that I can keep you all posted.  I wish that I had time to speak to more people personally, but these last two days have been crazy.

So, I went to work yesterday, then left in the  middle of patients to see the plastic surgeon, Dr. Karen Wells.  She went over the reconstruction procedure.  So, at the time of the mastectomies, she will place tissue expanders.  They look like implants, but you can add water to them slowly.  Initially, I am allowed to heal for a few weeks, then she will add water to them every 2 weeks until I am at the size that I want to be.  This takes anywhere from 3-6months.  After that, I will have another procedure which is when they place the breast implants, saline or silicone (up for debate a little, leaning toward silicone).  Then a few months after that, I will have another procedure to create nipples.  The entire procedure will take up to a year.  

They scheduled my procedure for July 8.  David and I leave for camp on Sunday, back on July 7, then the following morning will be my surgery.  So, I left work yesterday and won't be back until mid August.  That is crazy!  I am totally overwhelmed with the thought of coming back from camp, not even having a day to unpack and organize, then boom, big procedure.  But, the next surgery date would not have been for a few weeks and we wanted to get it done.  David says that he will do the laundry lol.  I guess it will be good to get it over with.

I have an excellent team of doctors and am going to put myself in their hands.  I also have an amazing support system and love you all.  My mom and dad will be here too.

Emotionally, I am having severe mood swings, feeling lucky, then crying.  I am going to take one day at a time and one procedure at a time.  Will be happy when this is behind me.  And still feel lucky that surgery is all that I will need.  

I am heading to do some labs, then pre-op appointments with the surgeon and the hospital today.  That is it for now.

Love, 

Lauri

 On Mon, Jul 1, 2013 at 6:06 PM, Lauri Hochberg <lauri.hochberg@gmail.com> wrote:

Quick update:

We are up at camp.  It was so great to see the kids, they have been having a blast.  The nice thing about being here is that nobody knows my diagnosis.  So, I thought that I could pretend that everything was ok, but it is not so easy.  My surgery is one week from today and I am have been a bit scared lately about the procedure itself.  I have never had a long surgery like this.  Anyways, it is what it is.  This has all happened so fast that I spent the entire 8 hours in the car yesterday going over it all in my head and talking David's ear off.  I also talked to several people who have been through this, which is sort of helpful, but sort of scary too.  

Working at the health center at camp is fun and distracting.  The staff up here are great and David and I have had a very warm welcome.  It is nice to be in the middle of nowhere.  The trailer seems a little less awful this year.  Maybe because we were more prepared.   We do have wifi, but cell reception is not great.  

I did not think about this part, but I am constantly around sick kids in the health center.  I really cannot be sick before my procedure so am trying to be very careful.  Keeping my fingers crossed that I do not catch anything this week.  

OK, that is all for now.  Thanks again for all of the love and support for me and David.  We are very lucky for all of you.  And I added a few more to this email list.  Hope you all do not mind the mass email.  It feels good to let my feelings out.  The emotional roller coaster continues, but each day is a tiny bit better.  No need to respond unless you want to.  But email is probably best.  

Love you all,

Lauri

 On Wed, July 3, I sent the below email:

Hello friends and family.  Just a couple of updates.  First of all, wow.  So many people have reached out to myself and David that we are overwhelmed.  I don't really know what to say except that I feel a tremendous amount of support from near and far.  That makes me feel stronger and very loved.  I added just a few more to this email list but decided yesterday that I may start a blog.  I will send you all the link to the blog as soon as I figure out how to start it.  I think it will work nicely because that way,  I can journal and write as much as I want, whenever I want.  And you can go to the blog to see what is up rather than get emails sent to a group. And I believe there is a way to respond to me as well.  You can always send me a private message by email if you want too.

The second thing I wanted to say is that I thought about starting a website like "caring bridge" or "lotsa helping hands", but the truth is that I went to look at their sites and they are just too depressing!  They make me feel like I have one foot in the grave, and that is not the case.  I am going to be fine!!   I am not expecting this to be a long,drawn out process.  In fact, the initial surgery is going to be pretty awful, but then I will recover and be fine.  The second and third surgeries will be outpatient and not as difficult.  So, I know that everyone wants to help and that is amazing.  I so appreciate all of you so much.  But, I don't think there will be that much to do.  

I do think that some meals will be nice during the initial recovery period, so I decided to set up a sign up genius website for this purpose.  But, don't expect that there will be a ton to sign up for.  Although, David is excited about being fed, but I told him that I am the patient!!  Anyways, sign up genius is much less depressing.  So, expect a link to that sometime soon.  Francie Shames is going to help me with that.  But, really, we have some time.  The surgery is in 5 days, but I won't be home from the hospital until 1 week from today.  

Ok, that's all for now.  I guess this wasn't a quick update, but I tend to talk too much :) .  Going to try to figure out this blog thing.  Stay tuned.  

By the way, I feel better and stronger emotionally everyday.  Getting used to this diagnosis a little more.  And feel so grateful for so much:  early diagnosis, excellent prognosis, amazing friends and family.  Life is good.

Love,

Lauri

 

 

So, now we are up to date.  It is Thursday, and my surgery is in 4 short days.  We have not told the kids yet.  David and I decided to let them enjoy their last days at camp.  We will tell them on at some point on Sunday when we drive home.  That is going to be tough, and I am not looking forward to this discussion.  Somehow, I am going to have to hold it together when I tell them.  But, my plan is to keep it simple, but honest.  I will tell them that I have cancer, but not everyone dies of cancer.  And I am going to be fine.  My cancer is curable, which it is.  I still think it is not really cancer.  It is "pre-cancer" or "baby cancer" or "cancer Junior".  that is my story and I am sticking to it!  I am still trying to hide in a closet of denial.  In fact, at some point everyday, I ask myself and usually David too, "Is this really happening?"  

 

I am totally overwhelmed by the outpouring of love, support, and encouragement from our friends and family.  I don't even know what to say or how to thank everyone.  But, I really feel very loved.  And your support makes me feel stronger.   

 

Rabbi Simon (one of our rabbis at our temple) is here at camp.  Camp Coleman has visiting rabbis each week and he happens to be here now.  We have been hanging out some and had a chance to spend some time together yesterday.  Actually David and Rabbi Simon jammed on their guitars for a bit, which was pretty cool.  I told him about my diagnosis and upcoming procedure.  He was very supportive and gave me some good advice.  I told him that I wanted to pray, but that don't really pray much.  He advised me to not just to pray to get better, but to pray for strength for myself, my doctors, my family and friends.  That sounds good to me. 

 

Wow, this is a long "welcome to my blog" post.  I'll try to keep the others more brief, but you all know that I love to talk.  More later.  I am going to try to invite you all to look at my blog.  Will see how that goes.

 

Love,

Lauri