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.
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.
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:
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.
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.
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.
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.
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!
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.
OK, this is actually more like the FIRST countdown, but no one has written that song that I’m aware of, and as with all things in my life, this must have a theme song. Or twelve. My husband keeps playing the beginning of Vanilla Ice’s “Ninja Rap,” the theme song from Teenage Mutant Ninja Turtles II. I told him that I think it’s what caused the migraine he woke up with this morning.
So I’ve digressed… the main update is that Lefty now has an expiration date. August 16, 2012 will be mastectomy day, aka the end of my left breast.
She’s got 13 more days… I’ve considered taking her on a farewell tour, but don’t know what it is that I think she needs to visit. I never have done topless beaches. And I don’t know that I’ve ever flashed anyone other than my husband… or while breast-feeding, and even then I preferred to use a blanket. I may not shy away from TMI, but I’ve never felt the need to flash. It wasn’t until the last few years that I started wearing things that are lower cut… and lower cut on me than they would be on those of normal sized cleavage.
The thing I’m still most neurotic about with this is that I’ll likely go at least a year with little to nothing on the left and a my cartoon boob that grew there on the right. Unless I take my husband’s advise and fill my left bra cup with a water balloon. Or my colleague’s and fill said water balloon with Cupcake Devil’s Food Cake Chocolate Vodka. Depending on how all of this works on the pain scale, that just may be a plan!
So the biopsy came back sooner than anticipated. There are three lumps in my left breast… all cancer. Since the one they didn’t find until the MRI and biopsied yesterday is more than 10 cm from the other ones… lumpectomy is no longer an option.
I’m having a mastectomy. Who the hell has space for tumors that cover 14 cm within one breast? This girl.
Today I’ve been setting up a lot of appointments. Meeting a plastic surgeon next Tue. Final pre-consult with my surgical oncologist on 8/13. Then I got the update, and I got to make my appointment.
The very nice lady who does my surgeon’s scheduling came back and said the first time the plastic surgeon was available is 8/29. I pointed out that with a KI67 of 60%, I’d really like to get in sooner. So she checked to see what she could do… and I’ll have a final date tomorrow- it will be sooner, which is great.
On a random but cool note, check out my comment from “Superglued Boob,” it’s from a woman in Norway, whose NAME IS NINJA, and is also going through almost the exact same timeline as I am… she’s even 37 too. So welcome to you Ninja from here in Seattle. Hopefully we will BOTH kick some breast cancer ass!
The Breast Cancer Ninja 