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Today feels like a bloggy day.  We had another appointment with the surgeon yesterday.  We talked more about the chemo before surgery approach.  There are several reasons to consider this approach.  I’ve already touched on this topic, but I feel I can describe it a bit more clearly at this point.

1.        If you can shrink the tumor you may be able to spare more of the breast.  In my situation, the area that is involved is too broad to be able to spare the breast.  At this point I have seen multiple doctors who all agree on this point.  In addition, I have two types of breast cancer.  One of them is DCIS (ductal carcinoma in situ).  The other is invasive.  In DCIS, the cancer cells are contained within the ducts of the breast, and the cancer cells have not invaded the surrounding fatty and connective.  DCIS seems to be easier to cure overall, but not as responsive to chemotherapy.  None of this is to say I couldn’t do chemo first, just that I wouldn’t get the gain of sparing the breast which seems to be one of the primary reasons for the chemo first approach.

2.        If you have chemo first, you will be able to see how the cancer is responding to the chemo.  (This would require additional imaging and biopsies.  I will have to review my earlier posts to remind myself how much I enjoyed these the first time.)  If you remove the cancer before chemo, you won’t be able to see whether the cancer is responding.  On the other hand, some of what is removed during the surgery and examined by the pathologist can be informative in determining the course of chemo.  This is information you would not have by doing chemo first.

3.        There is a clinical trial underway for neoadjuvant (chemo first) treatment.  If you are a good candidate for this trial it would give you access to newer medicine that is normally only given to people with advanced cancers or old people.  Is newer better?  Don’t know.  It’s kind of the point of the trial right?  Anyway, it could be better, and you’d be promoting science (which is not my highest priority at the given moment).

We are meeting with the medical oncologist today.  He will have more to say about items 1 – 3 above. 
So here is what is in my immediate future.  I will be having a surgery on 4/12. 

Most likely it will be to have a mastectomy of the left breast and to install a “portacath”.  The portacath is a medical appliance that is put, in my case, in the upper right portion of the chest.  They want it on the left to be out of the field of radiation later.  A catheter connects the portacath to a vein.  Under the skin, the portacath has a “septum” which is a self sealing deal that they stick the needle through.  This is what they will use to inject the chemo drugs and take blood samples.

If I decide to do chemo first, the 4/12 surgery will be just to install the portacath.  I have a meeting with the medical oncologist at 5 pm, and I should be able to decide tonight whether I’m doing chemo or surgery first.  Right now I’m leaning toward surgery.

The last piece of the puzzle is getting the results from the genetic testing.  I expect those to be back next week.  It’s unlikely, but if I do have a heritable mutation, then we will remove both breasts.  I pray this is not the case both for the impact to me and for the far reaching implications for those related to me.
Okay, so that’s the medical stuff.  Now for the other stuff.

Kevin is right beside me in this which I have to think makes all the difference in the world.  He has recently become so present for me.  He’s reading a book called “Breast Cancer Husband”.  I have to share a bit from the book, because I think it’s hysterical.  Did I mention I have a bit of a dark sense of humor lately?

Anger Management 

Which brings me to another point.  People will say – and ask – all sorts of things about your wife’s cancer.  No one would ask you how much money you earn or how often you have sex – but good friends, casual acquaintances, and coworkers might want to know which breast it is, and did they catch it early, and did her hair fall out, and all sorts of other intimate details. 

When one husband heard the “did they catch it early” question one time too many, he snapped back, “Nope, it’s too late.  Do you know anybody you can fix me up with?”

It’s a rainy day today.  I’m thinking about this old Eurythmics song.  (I think I’m going to make a Cancer Playlist.  Will let you know what it looks like when I’m finished.)

Here comes the rain again
Falling on my head like a memory
Falling on my head like a new emotion
I want to walk in the open wind
I want to talk like lovers do
I want to dive into your ocean
Is it raining with you

So baby talk to me
Like lovers do
Walk with me
Like lovers do
Talk to me
Like lovers do

Here comes the rain again
Raining in my head like a tragedy
Tearing me apart like a new emotion
I want to breathe in the open wind
I want to kiss like lovers do
I want to dive into your ocean
Is it raining with you

Thanks Kevin for walking and talking with me like lovers do.  I need you.  You’re my heart.

Here’s some stuff about some girlfriends.

I have a girlfriend who left for Korea 2 months ago to teach English.  Here’s a bit of our email exchange.  

LR: Miss you and worry about you.  It's very hard being so far away.

Me: I miss you and worry about you too...  Next time you see me I will be different in some ways.

LR: You will be the same in all the ways that matter.  Trust in yourself.  Trust in the part of you that will always stay the same through everything and invest in that.  Let the rest slip away.  It doesn't matter.

I know it doesn’t matter really that I will have one less breast and more scarring and no hair and a bunch of side effects, and I’ll probably age a decade in a year’s time.  I’m sure it will come as a bit of a shock for someone who hasn’t seen me in a year, but because my friend loves me and I love her, I know she won’t let her face betray a bit of shock.  She’ll tell me I’m more beautiful than ever or that I look like absolute hell. Either way, it doesn’t matter.  My real fear is that I’ll be a little less innocent, and a little more tough, and my heart will harden a little more.  So I guess if you know me, you know I’m not that innocent, and I’m pretty tough to begin with.  So that leaves my heart.  I will have to work and resist and pray to keep a soft heart.  It might mean all of it will hurt more, but it’s worth it mainly for my Midori.

I have another girl friend in Saudi Arabia.  I’ve known her since elementary school, but I hadn’t seen her in a lifetime.  We reconnected via Facebook, and she was in the states for her 40^th birthday.  It was such a joy to see her again.  She emailed to express her compassion for my situation, and I told her I would love to hear stories about her daily life as a distraction.  Since then she has been faithful in sending me stories about the life and times of her family.  I love to hear the everyday stories, especially about the children.  As a mom, they are so precious and familiar to me.  These are the messy moments that strung together are life.  It’s a breath of fresh air to have something to be engaged with that is not cancer.  It gives me hope.  I look forward to the stories, but more importantly, I look forward to getting back to the ordinary chaos of life that she describes.

One of my sisters in law lives in Germany and is trying to figure out how to be here during her spring break which should coincide with my surgery, assuming I go with surgery before chemo.  The plan is that we make a decision today, Kevin calls the Red Cross to find out if they will pay for the flight, and if so, she’ll be here the middle of April.  What a relief it would be to have her here.  I’m grateful for her willingness to come across the ocean to be with us. 

Then there’s my dear girlfriend that actually lives on this continent.  Okay so she actually lives closer to Cuba than Seattle, but still Florida is part of North America.  She told me she is coming to Seattle the first or second week of May (my choice).  She is coming with her son who is a week younger than Midori.  We can’t wait to see them.  She is leaving her younger son at home and traveling across the country with a 2 ½ year old just to be here and do whatever she can.  I am so grateful for her sacrifice.  Just knowing she will be here makes me feel supported, and the long overdue visit gives me something to look forward to.