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Member Since: August 26, 2008
Last Login: November 20, 2008
Location: San Francisco, CA
Occupation: Web 2.0 Business Developer
Homepage URL: route53.wordpress.com

Biography

Husband, son, son-in-law, nephew and cousin to survivors of breast cancer. 

As someone who has lived through this as a caregiver, I find myself deeper entrenched each time cancer hits the ones I love and when it reached my mother and wife I decided to take action.

As someone involved in social media I have added cancer to the topics on which I blog.  My perspective can't reach the true feelings and emotions of those who have been through this personally, but what I can provide is the perspective of a caregiver and hope that other caregivers can learn from my experience (both good and bad).  My goal is to help other caregivers and husbands cope with their feelings and emotions so that they can be helpful for their spouses.

I am currently working with a support group of husbands and relatives in coping with the many feelings and issues of a loved one with breast cancer at the hospital where my wife is getting treatment.

Diagnosis

Diagnosis: Dx 7/26/2008, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
Diagnosed: July 26, 2008
Type: Invasive or Infiltrating Ductal Carcinoma
Recurrent?
Metastatic?
Stage: Stage I
Lymph Nodes Removed: 2
Positive Lymph Nodes: 0
Tumor Size: 1cm-1.9cm
Tumor Grade: Grade 2 or medium grade
Hormone Receptor Status: Tumor has both estrogen and progesterone receptors
HER2/neu Status: Tumor does not have an excess of HER2/neu receptors or genes

Recent Posts by Route53

Posted in: Tests, Treatments & Side Effects + Breast Reconstruction, Created: 6 hours ago

How is your husband doing in all this???

Hi Linda,

Thanks for the post.  Yes we really hit the quiet waiting period for a bit until we decided on my wife's post surgery oncology plan.  So you probably haven't been in the hormonal therapy area of the site where my questions have been geared and also on the SGK site.  My wife and I also hit the proverbial wall waiting for my wife's swap out date to replace her expanders with implants.  We finally got the date which is a big relief.

I guess the big point I have for most women on here is that men are just different.  I personally might be on the more sensitive side of the spectrum and be more involved but I sometimes really feel like getting away from it all.  I also think the poor economy right now is on a lot of people's minds yet my wife doesn't even think about it and I don't even talk about it with her.  The stresses of everyday life are on my shoulders right now and I am carrying that load while she focuses on her own personal health.  I've always said that my wife and I have a 50-50 marriage and for a while I went 90-10 and I'd say right now we are 65-35.   I too have many hours such as now when I am awake and she is asleep.  I need that time to be alone with my own thoughts.  We all have to recharge our batteries in different ways.

Mocame I understand your husband's thoughts. Humor is a way to try and get through all of this.  My wife even laughed when she found out her implant date was going to be her birthday.  She called me at work and said, "I'm getting Boobs for my birthday".  It was a good chuckle but quickly saddened when we found our 9 year old son's classmate's mom found she had cancer too the other day.  I know you need to have levity so I am glad for you that you can laugh at it.  If it works for you, then keep it up.  He'll be okay with it eventually and at least he sounds like he has accepted it at least which is half the problem.

I'd just talk to him and tell him you are lonely.  I had to talk to my wife the other day about just giving ourselves what we call "cancer free" hours in the day when we are together on the weekend where we don't talk, think or even recognize that cancer is part of our lives.  I told her I need that time. Just to watch football, play catch in the backyard or even have a nice family dinner.   

Susan our children have also been our bright light in this. My wife (also a NJ gal) has missed quite a few of our children's events and I have tried my best to videotape everything for her (my son even sings songs from his chorus class to her in bed).  Yes, working FT, taking care of kids, cooking, shopping, etcis tough and I was so exhausted for a time, but it is a labor of love (for my children and my wife). 

Linda, back to your question.  My wife had a total skin-sparing surgery in which her nipples were not removed.  We didn't even know it was going to be an option and she had already planned on getting her nipples tattooed.  She said that even if they didn't feel the same sensation wise, she wanted them to look like breasts when naked.  In the end i was ready to just go with what made her feel as normal as she could feel alone or with me.

As for what I think?  I think men are more visual and would prefer to see nipples and areolas.  It is good that you are thinking of him, but definitely ask him what he thinks.  It is funny.  I might be old-fashioned, but I'm not into all these tattoos that many people have these days, but I'd personally be okay with tattooed nipples over even tattooed eyebrows which seem to becoming prevalent.

ladies, sorry for the long-winded answer.

Route53

http://route53wordpress.com/ 

Route 53 http://route53.wordpress.com; Bilateral total skin sparing mastectomy w/ reconstruction
Dx 7/26/2008, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
Posted in: Tests, Treatments & Side Effects + Breast Reconstruction, Created: 19 hours ago

How is your husband doing in all this???

Joei and Susan,

 My wife had her surgery on 9/9 and will be having her exchange surgery on 12/12.  While we had a very active life physically and emotionally before surgery, our priorities have changed lightly although we've remained active.  I think our emotional relationship has focused not so much on us but more on caring for our children.  Physically I have been exhausted from both work and taking up more duties around the house (admittedly probably should have taken a little more of it all along, but my wife likes to control those things anyway).

In the bedroom, we have gotten our energy back up but I personally feel uncomfortable and she understands.  Not to get too personal here, but our physician and even a husbands group that I went to said it was not too dissimilar to you life when /if you've ever been pregnant.  Some men/women feel guilty/edgy about having a sex life while pregnant.  It can be awkward and uncomfortable.  Some people don't mind.

The same feelings might be there regarding breast cancer. I do feel awkward even when my elbow hits against my wife's expanders and I cringe when my children lean up against their mother.  In the end, my wife knows my feelings, that I care for her and that the bedroom is not what makes up my love for her.  We all take our path and as you put it so eloquently Susan, we all go through the tough times.

We are excited about the opportunity to move on after her 12/12 surgery and rekindle the spirit between just us and have even booked a night in Vegas to go see Elton John on Valentine's Day.

In the end a healthy dialogue is great and you two should be commended for caring for your husbands even through this tough time in a fight with your own body.

Route53

http://route53.wordpress.com

Route 53 http://route53.wordpress.com; Bilateral total skin sparing mastectomy w/ reconstruction
Dx 7/26/2008, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
Posted in: Tests, Treatments & Side Effects + Breast Reconstruction, Created: 19 hours ago

December Reconstruction Ladies

Houston, we have a surgery date.............As my wife called me excitedly today while i was at work.  Finally another long wait is going to be over

 Please add my wife (MarketingMom) to the list:

12/12 - Exchange of Expanders to Silicone Implants

Route53

http://route53.wordpress.com

Route 53 http://route53.wordpress.com; Bilateral total skin sparing mastectomy w/ reconstruction
Dx 7/26/2008, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
Posted in: Tests, Treatments & Side Effects + Hormonal Therapy - Before, During and After, Created: Nov 17, 2008 05:39 pm

Tamox + Ovarian Sup + Bisphosphonates?

Hood,

My wife will be starting the same trial too.  Not sure when she'll find out what treatment she'll be getting.  She definitely did not want the arm that called for an IV,

Route53 (Erik) 

http://route53.wordpress.com

Route 53 http://route53.wordpress.com; Bilateral total skin sparing mastectomy w/ reconstruction
Dx 7/26/2008, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
Posted in: Tests, Treatments & Side Effects + Just Diagnosed, Created: Nov 17, 2008 12:11 pm

Just Diagnosed

MDempsey and Shanda,

Sorry to hear.  When I hear stories like yours it just puts me back 4 short months ago when we found out and two short months ago when my wife had surgery.  Back then, time seemed to stand still but when we look back, time actually flew by.

I'm not a doctor, but if either of you are anxious, your physician can prescribe something for you like they did for my wife although if you can avoid it and keep your nerves intact naturally through the support of friends and family, that is highly recommended.

MDempsey, I highly recommend perusing these boards about telling your child.  You didn't mention their age, but there are lots of tips here.  Obviously you know your child best and how they will react.  I thik a lot of how they react will come from your delivery.  Strength comes from strength.  You will need her to be strong for you, so share what strength you have together.

Good luck to both of you.

Route53 (Erik)

http://route53.wordpress.com

Route 53 http://route53.wordpress.com; Bilateral total skin sparing mastectomy w/ reconstruction
Dx 7/26/2008, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
Posted in: Tests, Treatments & Side Effects + Help Me Get Through Treatment, Created: Nov 15, 2008 12:57 pm

Had double mastectomy but not clear margins???

My wife had a bilateral total skin-sparing mastectomy and her margins were not perfectly clear either.

The surgery was 9/9 and part of our hold up in replacing the expanders with implants is that they need to schedule a small procedure at the time of the swap so that the breast surgeon can go back in and scrape a litle more tissue that is closer to the skin.

I know that there is a big oncology conference in San Antonio next month so maybe that is where your case might be presented.

Route53

http://route53.wordpress.com

Route 53 http://route53.wordpress.com; Bilateral total skin sparing mastectomy w/ reconstruction
Dx 7/26/2008, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
Posted in: Tests, Treatments & Side Effects + Help Me Get Through Treatment, Created: Nov 15, 2008 12:52 pm

How old were you?

My wife is 42, my mother was 67, my mother in law was 55, my aunt was 53, and my two cousins were 42 and 39.

Route53

http://route53.wordpress.com

Route 53 http://route53.wordpress.com; Bilateral total skin sparing mastectomy w/ reconstruction
Dx 7/26/2008, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
Posted in: Tests, Treatments & Side Effects + Help Me Get Through Treatment, Created: Nov 15, 2008 12:49 pm

New LE Website--SteupUp-SpeakOut.Org

Good job.  Although my wife hasn't had lymphedema, the passion behind this issue and your efforts really shows through.

 Route53

http://route53.wordpress.com 

Route 53 http://route53.wordpress.com; Bilateral total skin sparing mastectomy w/ reconstruction
Dx 7/26/2008, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
Posted in: Tests, Treatments & Side Effects + Help Me Get Through Treatment, Created: Nov 15, 2008 12:46 pm

Be OK - Ingrid Michaelson

You're welcome.  I just find myself listening to lyrics of songs in a different way these days

Route 53 http://route53.wordpress.com; Bilateral total skin sparing mastectomy w/ reconstruction
Dx 7/26/2008, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
Posted in: Tests, Treatments & Side Effects + Hormonal Therapy - Before, During and After, Created: Nov 14, 2008 01:04 pm

When did you start Hormonal Therapy after Surgery?

MK, Congrats. 

Yes, this is all an individual decision.  Your oncologist can change your thoughts.  In the end, my wife is a bit of a control freak and wanted to try it all.  If it becomes a hassle she could just stop at any time.  I think there is one randomized group of the test she is looking at that I know she'll just not do.

This is my wife's oncologist's bio if interested: http://www.ucsfbreastcarecenter.org/hsrugo.html

Route53

http://route53.wordpress.com

Route 53 http://route53.wordpress.com; Bilateral total skin sparing mastectomy w/ reconstruction
Dx 7/26/2008, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
Posted in: Tests, Treatments & Side Effects + Help Me Get Through Treatment, Created: Nov 14, 2008 12:55 pm

Be OK - Ingrid Michaelson

I just heard this song today and I could only think of my wife and all the women on here suffering from breast cancer.  I hope if you are just looking for two minutes of pleasure that this might set your day on a different course (just click on the link below and make sure you listen to the song called Be OK).  She has two other songs listed here that you can also listen to:

http://sessions.ticketmaster.com/41.html

Thanks and Have a great day,

Route53 (Erik)

http://route53.wordpress.com

Route 53 http://route53.wordpress.com; Bilateral total skin sparing mastectomy w/ reconstruction
Dx 7/26/2008, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
Posted in: Tests, Treatments & Side Effects + Hormonal Therapy - Before, During and After, Created: Nov 14, 2008 03:17 am

When did you start Hormonal Therapy after Surgery?

Well she has a well respected oncologist and is willing to do what it takes to help studies for future people even with her low risk.

She waffled many times and after we met with the fellow who gave us a better description of all the options and side effects, my wife said she'd choose just the Tamox and Ovarian suppression.

Then the oncologist came in, they hashed it out even more and the next thing you know, my wife signed up for one of the bisphosphonate trials.  (she could always quit if she isn't happy)

Rose, her oncologist doesn't go by the normal Oncotype ranges because she believes that the confidence levels and margins for error if not precise could make her borderline. 

 Frankly my head was spinning.  I told my wife it was her choice and she should do what she felt was right.  She asked what I thought and I told her I wasn't going to be stuck with a needle or have to rearrange my schedule to take an IV.  But that is just me and that is why I let her make the decision

Route 53 http://route53.wordpress.com; Bilateral total skin sparing mastectomy w/ reconstruction
Dx 7/26/2008, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
Posted in: Tests, Treatments & Side Effects + Just Diagnosed, Created: Nov 13, 2008 02:51 am

Hypochondria and BC

I can tell you that my own wife had a cough that developed the day she was diagnosed with cancer and didn't go away until the day she got the call from the doctor with her results from her surgery.  They gave my wife atavin so she could rest at night

I can also say that I too feel every bump in my body and wonder if I should go get a biopsy done on some parts of my body.

Route53

http://route53.wordpress.com

Route 53 http://route53.wordpress.com; Bilateral total skin sparing mastectomy w/ reconstruction
Dx 7/26/2008, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
Posted in: Tests, Treatments & Side Effects + Hormonal Therapy - Before, During and After, Created: Nov 12, 2008 01:52 pm

When did you start Hormonal Therapy after Surgery?

Thanks everyone.  We're at 8 weeks now and I think at age 42 and premenopausal she's struggling with whether to jump in right away and fulfill her obligation she feels to be part of a test with bisphosphonates and tamox versus being scared of the side effects of the Tamox and wanting to wait until after her still unscheduled implant swap which we will hopefully get done in the next four weeks.  I'm sure most of you had a similar feeling,  It is one of the few detours we never thought we'd have to encounter.

Unfortunately right now I kind of feel helpless in giving her my opinion which she wants.  It's like telling her which color shoes to wear.  Maybe that is why I only own 4 pairs of shoes.

Route53

http://route53.wordpress.com

Route 53 http://route53.wordpress.com; Bilateral total skin sparing mastectomy w/ reconstruction
Dx 7/26/2008, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
Posted in: Tests, Treatments & Side Effects + Hormonal Therapy - Before, During and After, Created: Nov 11, 2008 03:29 pm

When did you start Hormonal Therapy after Surgery?

My wife had her surgery on 9/9 and we've gone through her fills and had her first appointment with the Oncologist 10/12 and have yet to get started on the Tamoxifen as we are looking at some of the potential trials she might participate in.  We're having a follow up meeting to discuss the options tomorrow.

 Just wondering how long (for those of you who didn't do chemo or radiation) it was before you started taking the Tamoxifen and if there were any raodblocks that prevented you from starting earlier.

Route53

http://route53.wordpress.com

Route 53 http://route53.wordpress.com; Bilateral total skin sparing mastectomy w/ reconstruction
Dx 7/26/2008, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
Posted in: Tests, Treatments & Side Effects + Surgery - Before, During, and After, Created: Nov 10, 2008 08:02 pm

How soon after mastectomy w/expander were you able to drive?

My wife didn't drive until 10 days later.  Mostly the drains made her very uncomfortable.

Route 53 http://route53.wordpress.com; Bilateral total skin sparing mastectomy w/ reconstruction
Dx 7/26/2008, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
Posted in: Tests, Treatments & Side Effects + Surgery - Before, During, and After, Created: Nov 10, 2008 08:00 pm

For those who "could" have Lumpectomy.... why choose Mast?

Good question.  My wife was originally told she was a good candidate for a lumpectomy.  When my wife told the breast surgeon that she'd prefer a bilateral mastectomy, her physician did not flinch.

My wife had made up her mind before.  A side note, as my wife made this decision she was not even thinking of reconstruction until the physician told her she could have this done in a single surgery.

My wife felt fortunate that the cancer was detected and did not want to rely on luck again to save her life.  Since her mother had a bilateral mastectomy 20 years prior and my own mother had a single mastectomy 5 years prior, my wife felt this decision was a no brainer.

Route53

http://route53.wordpress.com

Route 53 http://route53.wordpress.com; Bilateral total skin sparing mastectomy w/ reconstruction
Dx 7/26/2008, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
Posted in: Tests, Treatments & Side Effects + Surgery - Before, During, and After, Created: Nov 10, 2008 07:54 pm

6.5 weeks after surgery - and still no game plan

We did get a quick meeting 7 weeks after surgery with our oncologist.  We did hear from our oncologist that my wife would not need chemotherapy, but we were given several options for hormonal therapy and bisphosphonates.

While there has been no urgency other than to choose to become part of the study, we still have been more concerned about the lack of game plan as to when my wife's swap surgery would be as we were told Mid-November originally, but now we still do not have a proper date.

Route53

http://route53.wordpress.com

Route 53 http://route53.wordpress.com; Bilateral total skin sparing mastectomy w/ reconstruction
Dx 7/26/2008, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
Posted in: Recovery, Renewal, & Hope + Moving Beyond Cancer, Created: Nov 10, 2008 02:33 am

Is It Too Much?

LOL!  Well in the end it is still cheaper than Whole Foods!

Route53

http://route53.wordpress.com

Route 53 http://route53.wordpress.com; Bilateral total skin sparing mastectomy w/ reconstruction
Dx 7/26/2008, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
Posted in: Tests, Treatments & Side Effects + Breast Reconstruction, Created: Nov 10, 2008 02:31 am

Exchange Scheduling Run Around

Yeah, it is squeaking and hopefully we will get a firm yes in the next day or two.

 Route53

http://route53.wordpress.com

Route 53 http://route53.wordpress.com; Bilateral total skin sparing mastectomy w/ reconstruction
Dx 7/26/2008, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-

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