What do you call a ninja sidekick??

by

Whatever you call them, that’s me. The BCN is currently recovering but I know many of the followers would want a more thorough update. When this post is proofread, you will know Ange is back to 50%. I will try to be ninja brief.

Both boobies are now official property of UW medical research. Surgery started late, but went as planned. All three lumps were removed, although they are waiting to call them one lump or three. (Great, now Def Leopard is stuck in my head again). More pathology later in the week. The main lump area, you know the one responsible for starting this whole mess, was the size they predicted.

Sentinal lymph nodes came back initially as clean. While the quick test isn’t always accurate for detecting cancer, the surgeon did mention the looked healthy. They will do a complete lab for those as well in the next few days. If that pathology is clean too, it is a sign that the cancer did not likely spread out of the breast.

Ange is in a standard hospital room as of midnight when we left her in good hands. I think the recovery nurse summed it up best when she said my wife just got hit with a mac truck, normal has lost meaning for the next few days. She was still a little loopy, and probably will be for another 36 hours. She will likely be home late Saturday, but we will find out more tomorrow.

Thanks to everyone for all there support. We have a really long road to go, but we got the best start we could hope for today.

I would suggest you share this soon with interested others before Ange gets all her sense back and this post ends up like a drunken Kardasian tweet and magically disappears over night.

I’d say goodnight, but it’s morning. (J)

This Is It!

by

Again, more like the first countdown, this is likely the first it, but 24 hours from now I’ll be out of surgery and resting uncomfortably in my hospital room for the night.

First and foremost, thank you all for the major outpouring of love and support.  I do feel so lucky and loved, and I really do appreciate it, even if I get all embarrassed and don’t know how to show it.  Every time I take those INFP whatever the heck they are tests, I come down right on the line between introverted & extroverted.  I’ve decided I’m the world’s shyest extrovert.  I can overshare when I’m in my comfort zone (aka, my couch & a laptop or people I know well 1:1) and if I need to make a presentation where I know what I’m talking about, I could talk to a gazillion people at once, as long as what I feel like people are paying attention is the topic, and not me.

Ninjas work in the shadows, not in the middle of a crowd of wonderful people wearing pink and seated under a bouquet of “boobloons.”

I work with crazy people… who I love… and who make me boobloons.

But when you are a Ninja, you must accept and soak in the love. Even when it might be easier not to.

OK- here’s how my day will look tomorrow:

7:30a- Check in to hospital

8:30a- Contrast and lymph mapping so they can tell which are the sentinel nodes to take out on Lefty.

Approx. 12:45p- 6-8 hour bilateral mastectomy, including insertion of tissue expanders.

Spend night in the Univ. of Washington Medical Center.

It will be at least Friday before I can update unless someone lets me have my phone in the down time tomorrow, but please know that I do appreciate all of the love, happy thoughts and prayers.  And I’m sending them all right back at you, even if I’m dorky about it.

The Wine Boob

by

Because I really needed a laugh last night, I broke open the wine cube that my lovely friends brought over this weekend (I forgot to take a picture of the actual box, but this is just like it but I think mine is Pinot Grigio) and took out the box and put it in my sports bra.

This is the result:

Pinot Grigio Lefty, sports bra edition

So we have now learned, I will be the most fun EVER to take places where you can’t BYO Beverage. Yep, that just TOTALLY happened.

Original Tumor Ninja

by

Just a few days ago, as I was coming to grips with all of this and starting to share my news when a former colleague who I love and have been SO proud of posted a pic on her Facebook page, “Getting a new chemo drug. I know it’s working!”  and I knew it was time for me to share:

Hey Kath- Just wanted to let you know I’ve been thinking about you.  Almost a month ago I found a lump in my left breast, and since then we’ve confirmed I have some pretty aggressive breast cancer. I’ve got a mastectomy scheduled for 8/16, but on the left side only… I’ll still need an extra special over-the-shoulder-boulder-holder for righty, since my surgical oncologist wants me to wait until after my likely radiation and chemo before dealing with reducing that side from what is currently a K-cup. I’ve been thinking a lot about all of the grace that you have faced your situation, and I only hope that I can be as strong.  I know my path will be MUCH easier, since I don’t actually need the boobs any more, but I wanted to let you know that you continue to be such an inspiration to me. I know that the chemo you’re doing now will help you, just as I know I’ll kick this cancer’s ass… Love you! Ange

She and I used to joke about being busty, the “over-the-shoulder-boulder-holder” was her term for the feats of engineering that I call a bra, and for the seven years I was at KOMO, I had a chance to call her a friend. For 14 years, that beautiful, courageous soul fought against tumors in her brain, that took her voice, her breath, her looks, but never ever took away her spirit. And today, the side effects of that chemo, which worked TOO well and weakened her immune system to the point where she could no longer fight.  Kathi Goertzen fought her disease with everything that she had in her, but she did not ever give up who she was.

So it doesn’t seem fair that I’m completely freaking out over my stupid boobs.  But this morning I signed a piece of paper saying that we plan to cut them both off, and put in some tissue expanders. Temporary implants under my pecs that I will go in every other week, assuming I end up having chemo, the weeks I don’t get that, and have filled with more and more fluid until I can grow the appropriate skin, and after all of my treatment, I can have reconstruction.

But it doesn’t feel free to worry about things even like pain, when I will live.

On a positive side note, a friend brought over a small wine cube (two bottles) from Target. It fit in my sports bra… while I’m not wearing it of course… for now.  With the double mastectomy, I’ll be able to carry 4 bottles worth of wine, or whatever.  Must make use of these ridiculous bras somehow.

Goodbye to Boobs

by

So this morning I met with my surgical oncologist, and was thrown yet another curveball.

Upon further review of my record and discussion between her and the plastic surgeon I met last week, there were a few changes:

    1. Because I am young and healthy, my surgical oncologist is willing to do the double mastectomy.  Not only will Lefty go bye-bye, but I’m going to send Righty away along with her.
    2. From what we originally heard, we thought there was like an 80% chance of radiation,  There’s more like a 50/50 chance, and it will be determined by the size of the tumor once she’s out.
    3. The plastic surgeon doesn’t think I’m a good candidate for “the flap” where they use my tummy tissue because of my weight.  This is probably the most frustrating thing, because it’s not at all the impression that I had on Thursday.  The good news, however, is that if I get silicone, they look better, and won’t be lost when I DO lose weight. Because I will.

 

And while I’m typing all of this, a dear former colleague and friend who spent more than a decade fighting brain tumors passed away and it puts everything into perspective. I only pray that I can handle my minor trials as well as Kathi handled hers.

I can’t complain about my boobs anymore. Will have to write more later.

t-minus 6 days

by

In my PR job, I live in a world of work back schedules and t-minus mails more than I like. I’d rather be creative than organized.  But with less than a week left in the life of Lefty, this shit’s starting to get pretty real.

I have a headache, which I know will work its way into a migraine if I let it.  But I’m not supposed to take NSAIDs for a week before surgery so I can’t take Excedrin. Shit.

Yesterday I met with my plastic surgeon, and talked about reconstruction.  It has never occurred to me NOT to have reconstruction.  I hardly remember NOT having a chest.  Since I was a slightly chubby kid, I probably always did.  But for the last 25 years, I’ve had a considerably larger than average chest. And I’m freaking out more and more about having the cartoon boob on the right, and little to nothing on the left.

So we learned more about our options yesterday, and what I really get to decide this week is if I want an inflatable prosthetic to get put in when we do my mastectomy, or not. If I do, then a silicon prosthetic would be an option. If not, my only option for reconstruction would be using my own tissue.  But if I get radiation, which my understanding is likely, then I would lose the silicon option… and the inflatable one is painful.

And since no one in their right mind would reconstruct my breast at the current size, I’m going to get something done with Righty at some point, I’m thinking that since I”ll have to be lopsided, I will likely skip the tissue expander.  Although from what I saw, the implants might have looked perkier, but if I use my own tissue, they take “tissue” from my tummy, and make it into my boobs.

Let me say that again. I will get a flatter tummy AND normal-ish sized boobs.  Other than the hip to hip scar… sound like win-win to me.

More Than Words

by

I woke up at 4:30a again. It’s 5:09 now, and I’m hoping if I get some of my swirling thoughts out of my head I’ll be able to get a couple more hours of sleep.

It’s been a month since I slept through the night with any regularity.  It happens on occasion, but waking up in a dark room has become my new norm. This is what happens when you internalize shit. I’m just sayin.’

In the last two weeks since I started pushing my news onto others, the outpouring of love that I’ve experienced has been amazing. I’ve made colleagues including my clients, who you wouldn’t think of as super touchy-feely guys, cry. I’ve heard from friends who I haven’t heard from in forever. I get a lot of spontaneous hugs.

All of this is awesome (other than the crying, I hate making people cry) but as I told someone yesterday, I wish that people didn’t have to be diagnosed with cancer to feel this kind of love and support.

I know that a lot of people don’t know what to say.  That’s OK, in case you can’t tell from the awkward way I’ve been dropping my C-bomb, neither do I.  Neither WOULD I. And honestly, really, it’s OK if you don’t say anything.

I’ve realized there is another way, besides the even more than usual need for oversharing, that this thing is messing me up.  I’m doing next to no research.

I’ve said I’m a planner, but even more, I’m an investigator. When mom was diagnosed with colon cancer two years ago, I became an expert.  But I just can’t bring myself to do more than cursory searches about my own disease.  What does DCIS mean? OK, and Invasive Ductal Carcinoma? I’ve got that too.  This morning the pathology came back from the MRI guided biopsy on #3 and it was Intraductal Carcinoma. Which may, or may not be the same as DCIS?  Sigh.

Usually, this would mean hours of research.  But until I get through the surgery, I just can’t bring myself to do it.  I get enough to know what the words mean, and then I stop.  Like getting more detail would make it too real.  I’m still trying to curl up like a potato bug, although by sharing so publicly, I’m not letting myself do it.  Or at least that’s how I’m deluding myself today.

OK- enough poor me.

I do have a mission for everyone who reads this today.  Find someone who you care about and haven’t talked to in a while, and tell them that they’re awesome.  One of the easy ways to do this would be to go through your FB friends, and instead of “cleaning them out” because you haven’t talked to them, do the opposite. Reach out.  That friend who you keep thinking about, but never seem to make the time to make contact?  Make the contact.

No one should have to be diagnosed with cancer to feel loved or feel strong. And we ALL have amazing friends who are just a phone call, text or IM away.  We just have to take the time to have that one on one contact.  I bet you’ll BOTH feel better for giving it a try.

Does Anyone Know People At CamelBak?

by

Because I think I have a BRILLIANT new business proposition for them.

This weekend I did a little bit of poking around online, and I’m not seeing a lot of mastectomy bra solutions that have a flat spot for lefty and a K-cup on the other side.  Therefore, I think that we’ve come up with the ultimate solution.
The CamelBoob.

This would be a refillable prosthetic that I could put inside my current bras… to be filled with the liquid of my choice (nope, not thinking water), and with one side that has a neoprene layer to keep the liquid from being effected by body temperature.  Perhaps it could even include a pocket for an ice pack in those early days of after surgery?

Ideally, it would include the straw, and perhaps a clip to hold it on to the bra strap.  In fact for women who are smaller breasted and want a non-permanent breast augmentation, this could be a great party solution.

If I don’t get the call from CamelBak, I may try this myself with the bag inside boxed wine from Target.  If so, I’ll let you know how it goes.

T.M.I. Period.

by

OK- I’ve warned you I’m a chronic oversharer, but sometimes I’ll warn you when the post will be even more than usual too much information or TMI.  This is one of those posts.  It does not deal with Lefty, but other physical effects of the diagnosis on my girl parts. You have been warned.

I could just you know, not share this, but since this is the first time I’ve been truly pissed at Lefty and that’s more of the expected reaction, I thought I’d still babble at you all.

As I think I mentioned, my cancer is hormone receptor positive, which means that a) I need to not use any hormones for birth control, and b) I’ll be on hormone therapy for approximately 5 years after my main course of treatment is finished. This means they will basically shut down my ovaries & send me into early menopause.  Then I get to come OUT of menopause, and go through it whenever my body gets around to it on its own.

Fun huh?

But my bigger gripe right now is about part “a,” discontinuing hormonal birth control.  For the last 8 years, since my son was about a year old, I’ve had a Mirena IUD.  BEST. CONTRACEPTIVE. EVER.  For the last eight years of my life, I didn’t have to think  about contraception, other than when I hit the five-year mark and had to get it removed and get a new one.  And even better?  I have not had a full period since shortly after it was placed.

So I’d bet you can see the gripe coming… Friday it came out so that it was no longer feeding my cancer.  Sunday “Aunt Flo” came to visit.  It sounds dumb to whine about something that most women have to deal with once a month, but I’d forgotten how much having a menstrual cycle sucks.  I’m bloated. I’m cranky. I have cramps. And worst of all, MY FREAKING BOOBS ARE SWOLLEN AND LEFTY HURTS.

So there — I am having “normal” emotions about this shit.  Dammit Lefty!  This sucks!

Off My Chest, On To Yours

by

Today marks one month since I found the lump. And although I find it helpful to me to let other people know what I’m dealing with, I’m starting to feel pretty selfish.

It seems like every person who I’ve shared my news with is taking it harder than I am.  This seems more than a little messed up.  The idea is that I tell people and a) they think happy thoughts for me since I think that happy thoughts can help, b) people who are used to seeing me on a regular basis know why I’m at the doctor’s office all of the time for a little while, and c) everyone else understands why my head is not in the same place it usually lives… I’m a little distracted.

The point never has been, never will be, to make other people feel sorry for me or to make them think I’m a super-duper person.  I’m a normal person, who has an unpleasant disease.  I’m freaked out about things like having one cartoon boob and one inflatable prosthetic. I’ve spent several days obsessed with deciding what I should do with my roots, since I am figuring that I’ll lose my hair, and have it made into a wig so that I look normal when I need to.  I’ve cried. I’ve curled up in a little ball and considered not getting out of bed.

But so many of the people I talk to still make me feel like they expect more, and if I’M not going to freak out, they will will either decide I’m a super hero or decide to go into mourning for me. Please, pretty please, don’t.

There is very little about this that does not suck. I’m a planner, and this is throwing off, well, almost all of my plans for the next two years.  I was really and truly taking control of my body, and now I’m handing it over to my oncology team.   Even the choice between a mastectomy and a lumpectomy is being taken away by the cancer.  And the choice to get both taken off at once is limited by the need to have additional follow up treatments which will limit healing.

But in the choice between laugh and cry, I chose to laugh.  In the choice between getting angry at fate and saving the energy to fight the cancer like a ninja, I chose to fight. So please do me a favor and don’t cry for me. Laugh with me. That’s really all that I need you to do.  Otherwise, I feel like I’ve passed my freak out on to you.  And that would suck more than anything else.

For those of you are new (I’m likely going “facebook public” before I write again), you haven’t missed so much that you can’t read all of my babble,  but if you want the cliff notes, here’s what I heard at my first visit with my oncologists, and here’s the info from the follow up MRI guided biopsy.