Superglued Boob

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Just a quick update to all- today’s MRI guided biopsy results will not come back until Friday… I’m hoping to start building a timeline then.

 

An MRI guided biopsy has all of the unpleasantness of an MRI, some of the compression of a mammogram (including an actual mammogram afterwards) and the residual pain of a normal biopsy.  FWIW, not something I’d reco if you can avoid. The cool NEW thing I go to try was super-glue instead of tape.  I took Excedrin this AM when I left the house because I didn’t want to get in a noisy MRI with the beginnings of a migraine.  But that makes it harder to stop the bleeding from poking a hole in my boob. So when they couldn’t get it to stop, they used superglue.  It’s more comfortable the the astrisk of tape…

 

I’m back in a better place today.  I think that I really had convinced myself that all I would need is surgery… chop them both off and be done with it.  I’m now resigned to the longer term treatment, I just want to get it started. Preferably now.

 

More Tests, Not Enough Answers

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OK, I thought this post would be all about next steps and what the plan looks like to ninja the cancer out of my breast.  Not so much.

Let’s start with what I DO know. Right breast, the mass was a normal healthy lymph node. End of story for righty.

Lefty, we know more from pathology:

    • Staging isn’t done until surgery, but my surgeon is guessing Stage 2
    • Still no sign of lymph nodes involved
    • In breast cancer, they give the cells grades of 1-3, speaking to how aggressive the cells are. My main tumor is grade 3.
    • There’s a protien that gives the rate of cell growth, KI67. Below 10% is low, above 20% is high, and in between is intermediate. My tumor is at 60%
    • I’m ER/PR positive, which means that I’ll be on estrogen supression after my treatment is all over, and that my IUD that has hormones in it has to come out… NOW

 

The biggest bomb is that today’s MRI found ANOTHER mass in Lefty.  So tomorrow AM, I get to go BACK to SCCA for an MRI guided biopsy… since ultrasound didn’t find this one and I still am a fan of them not indiscriminately taking chunks out of my breast.  If this new mass is negative, then I can have a lumpectomy.  If not… mastectomy.  Either way, I’m likely to get radiation… and a very likely to get chemo.

 

I think the thing I’m having the hardest part wrapping my head around is the surgical decision.  I thought that I could just get them both chopped off… that doesn’t seem to be an option, so I’m looking at at least some time with nothing to something on the left side, and my cartoon sized K-cup on the right. I’m not sure why this freaks me out more than anything else… but there you go.

 

So here’s the little bit of a timeline that the medical oncologist gave us:

    • In the next 2-4 weeks, I have whatever surgery we decide on
    • 2-3 weeks off, then chemo
    • Chemo will last anywhere from 3-6 months
    • Radiation will be 6 weeks, once a day, M-F
    • After that, I’ll start the endocrine therapy… which will go for the next 5 years
    • And somewhere in there I’ll have several more surgeries for reconstruction… should be done with that in the next 2 years.

 

So yeah.  At this moment I’m just exhausted. So I’m going to sleep on it, and try to figure if I can get my head back into work, where I’d really rather that it was all along, as of 11a tomorrow.

Anticipation

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This weekend was great, lots of time to relax, but as we got closer to home, sometimes there has been too much time to reflect.

I’m sitting at SCCA, waiting for my appointments to begin, and I’m feeling sick to my stomach. Much of the last 24 hours as this time has approached, I’ve felt like there’s a big weight on my chest, like my 17 lb dog is just sitting on me and I can’t quite breathe… But now I’m fighting a full blown panic attack. I don’t feel brave and tough or ninja-like, I’m just scared. I keep checking to see if it has gone away. No such luck.

This weekend was my 20 yr HS reunion- I hadn’t decided to go, but the diagnosis clinched it. I couldn’t imagine what else I’d think of to say about me… Since it’s all I can think about.

Headed in. Will update with next steps this evening. For now I’ll concentrate on not throwing up. 🙂

Lucky

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Today I worked a part of the day, and then drove from Portland, through the town where I lived from 1st-5th grade, Corvallis, and on out to Newport, Oregon.  In fact, I’m writing this from my hotel balcony overlooking the Pacific, While my boys (the 9 yo & the 37yo… left the Fluffy one w/ Grandma) doze in the hotel, I’m listening to people chattering at a bonfire as a counterpoint the the gentle crash of the waves.

I could have gone in and met my oncology team today, but the trip to Oregon for work was already planned, and I was really looking forward to this vacation, so I decided to keep the vacation plans.  I will still have cancer in another four days.

The thing that really struck me as the sun set today and I sat out here with my boys awake, was the best possible thing about this diagnosis.  It makes you really appreciate what you DO have.

As I mentioned, I’ve been sharing with my colleagues,  not everyone yet, because I still have more open questions than there are answers, and some people I just haven’t had a chance to pull aside and drop my little news bomb on… but every single person I’ve talked to has been wonderful and supportive.  The 20/20 program (which I’ve put on medical hold, but I’d lost 14.4 lbs in 3 weeks… even when I’m a TOTALLY emotional eater- GO ME!) gave me a gift certificate for a massage at their club’s spa.  My team gave me a gift certificate for a pedi… not things I EVER expected, but they really make me feel loved.

So as I drove past the church where we went when I was in Elementary School, and the last time I set foot inside was my Grandmother’s memorial service when I was 20, her favorite hymn came to mind.  I don’t even have to look it up, I’m pretty sure the right words just popped in to my head.

When upon life’s billows you are tempest tossed
And you are discouraged thinking all is lost
Count your many blessings, name them one by one
Count your many blessings see what God has done

I’m not super religious, and for a lot of reasons, even though I was raised Mormon and my grandpa told me that this means I’m going to hell, I have a hard time with organized religion.  But I do have strong beliefs in the kind of person I think I should be, and the kind of person I want my son to be.

And right now, that person is living right here in today. And that person is thankful.  I have a good job, wonderful friends, an amazing husband and son.  I have a nice house, a car that runs, and I can afford to be sitting here on vacation in where I think just might be the most beautiful spot on earth in this moment.

Really, what more can I ask?

I don’t WANT to have cancer, and I think that some of the people I’ve shared with think I’m in denial. I know I’m going to lose the breasts that have been a large part of my identity since I hit puberty.  I know I may lose my hair.  I know in some ways in the next few months, I may feel like I’ve lost my mind.

But I won’t lose who I am, or the people I love, or all of the people who love me. And I will continue to live my life in a way that all of those things will continue to be true.  And having ridiculous boobs will have nothing to do with any of that.

The space between “happy” and a hot mess

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I tend to be an over-sharer.  You should be warned of this early, and probably often, because really, that’s what I think I’ll be doing here, so in spite of the fact that I don’t have a lot of more news, I’ve been going through my list of people who I think will want to know about my diagnosis from me, and who I think need to hear my voice and understand that I’m OK.

Note, I did not say I’m happy, or terrific, or thrilled with any of this, but I am OK, when everyone seems to expect a hot mess, and to be honest, I’m starting to resent it a tiny bit.

Just now, a friend asked me, “I’m in shock, but you seem OK. How can you be OK?” I’ve said it before and I’m sure I’ll say it again, I don’t think that the alternative is worth considering.

My family is freaked out enough. My friends are freaked out. My colleagues, various degrees of freaked out. But my role in MANY of their lives for a good long time has been the calm in the storm.  As people get more stressed and frantic, somehow it allows me to tap in to my own inner calm.

I’m sure at some points in the coming months I will go through various stages of grief. I promise that I’m not currently in denial.  I don’t know that I’ve fully skipped to acceptance, but I’m also not yet angry, bargaining or depressed. As I go through treatment, I’m sure I’ll hit a mix of them all, but until I know what’s next I’m reserving judgement, and trying to focus ahead on what’s next.

The other thing I feel as I have these conversations is incredibly selfish.  The reason I’m telling people now, is that I will be talking openly, because I don’t feel like this is something that I should hide.  I’m not embarrassed. I haven’t done anything wrong.  But I feel like I’m pulling people aside and dropping bombs on them.  And I may be over-playing my importance in their lives, but they are all people who I feel like should hear these things from me, and I feel like I’m disrupting their thoughts, even their prayers, when there’s nothing that they can do.  I drop my little bomb, and then I move on, trying to show, not tell, how you continue to have a normal life with an unknown cloud over your head.  But I’ve left a little bit of that cloud with others, which sucks.  And perhaps I’m not being entirely fair to myself, but that’s another thing that you should also be prepared for me to do.

So knowing that, I’m trying to find the right balance.  Since there is a good chance that pre-menopausal breast cancer has a genetic link, I’ve informed those who share my genes.  And knowing that I’m going to be in and out of work a lot, I’m letting folks there know as well.

I was just on a conference call, and someone said, “Prepare to get uncomfortable.” Perhaps that’s where I need to start this conversation, since other than “OK,” uncomfortable is the spot along the continuum of happy and hot mess that I am right now.

When “positive” does not mean good

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(second and final post originally posted on Big Girls Can Tri, July 22, 2012)

I’ve decided that the medical community needs to change their terminology.

When I got the call Thursday afternoon, “Both sites sampled came back positive for invasive ductal carcinoma,” the only real positive is that I have an answer.  Not necessarily the one I wanted, but the one I expected… and still better than endless waiting.
The radiologist actually corrected himself and said that the “in situ” (which means if it’s just in the duct, or it’s invasive and has spread to other breast tissue) had not yet been determined, they were still finishing the pathology, but I have a feeling that again, he was going off of what he’s seeing. He may not be able to diagnose cancer based on looking, but he’s seen thousands of lumps, and knows what cancer looks like.
So really, at this point that’s all I know.
I will schedule an MRI at some point in the coming days, since I go to Portland for work and then the Oregon Coast for a mini vacation with my boys starting next Thursday. I have an appointment with Seattle Cancer Care Alliance’s Breast Cancer clinic on Tuesday, 7/31 when I will have a 60 min upper body exam (not sure how that takes 60 min… do they use a microscope?) and then I meet my Medical Oncologist, Radiation Oncologist and Surgical Oncologist.  At that point we’ll know next steps, and how we’ll treat it.
The flip side of positive is where I’ve decided to live.  Of course I’m scared. As I said several years ago, still my favorite Gray’s Anatomy line of all time, “Well, we’re all scared! I mean, if you’re not scared you’re not paying attention!”
But I refuse to live my life in a scared place.  I’m going to kick this thing’s ass. If my mom can beat the less-commonly survived colon cancer at 59, I have NO EXCUSE not to beat breast cancer at 38.  I’m young (in cancer terms J), other than weight and my heart thing, I’m healthy… and I have a LOT to live for. I have amazing friends, family & co-workers who will all be cheering me on.
I plan to be a 50 year breast cancer survivor, with an option to reassess at year 45.  I figure by 83 I’ll have a better idea if I want to live past 88.  But for now, that seems like a solid goal, 88 years old.
So I’ve been working through my friends, and creating a comms plan, because in case I haven’t mentioned it before, my favorite favorite thing to do in PR is crisis communications.  I’ve been working through people who see me on a regular basis, mainly colleagues who this will tangentially effect. I’ll hit a few more of those people as well as those who I feel need to hear from me personally vs. through the grape vine in the next week, and then will start to go more broadly once I know more on the 31st.
I’m even putting together a reactive QA, that covers many of the questions in my own head, as well as the responses to the awkward conversations I’ve now had over and over…
Me: Found a lump, blah, blah, blah, I have breast cancer.
Them: Oh, no! I’m so sorry.
Me: Thanks, me too.
Them: What can I do?  (See, the problem with being a proactive person like me, is you tend to collect those kinds of friends… who all need to DO something)
Me: Honestly, there is really nothing TO do right now.  I guess try not to smack me too hard upside the head when I seem distracted? Or be there for my mom & boys.  Hubby and mom are at the top of the freaking out list.  I think I’m actually at the bottom.  There is no choice here. I’m planning to kick its ass. I’m going to ninja the breast cancer right out of my breast.
But on the up side, I’d always planned to get breast reduction surgery… this way insurance CAN’T turn me down, right?
For the moment I’m sticking with the eating part at least of my 20/20 program.  I feel like I was JUST taking control of my body, and now it’s being taken away… but I can control what I put in my mouth. So that’s something.
On July 8, when I’d found the lump, but hadn’t yet talked to doctors, I did a workout that involves me walking up and down a REALLY steep hill by my house. It’s on a semi-secluded road, and I composed a little bit of a blog while I was trudging up and dancing down the hill, but with my mind centered on my boob, I didn’t bother to ever write it.
The gist is that the “Jimmy Eat World,” song, “The Middle,” came on, and felt like a perfect analogy for the being in the middle of changing my body, but since my diagnosis the chorus keeps running through my head, and has become a small addition to what I sing when my son needs a little extra help getting to sleep:
It just takes some time,
Little girl you’re in the middle of the ride,
Everything, everything will be just fine,
Everything, everything will be all right, all right.
Because that, my friends, is the plan. Everything will be all right.  I absolutely refuse to believe anything else.

I found a lump

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(This first post is transplanted from my old blog BigGirlsCanTri, July 18, 2012)

And honestly, although the diet has been going well, it’s about all I’ve been able to think about since.

Since most people who I pretend are reading this care in my head about the workout & weight loss stuff, I’ll tell you that the first week on 20/20, I lost 8.2 lbs.  And I weigh in again this afternoon think I’ll continue doing well, although I’ve done less working out on my own because I’m in a weird head place. The diet piece has been relatively easy, I just drink a lot of shakes, and can’t eat a lot of stuff. I’ve found things that I like for the other foods and keep eating the same thing because I don’t have the mental energy to be creative about it yet.  But although I WANTED popcorn when I went to the movies the other day, I didn’t eat it. And that was fine.
But today, I feel like my entire existence is centered on my left breast.  I guess it was two weeks ago now, I was showering, and I usually lift each one to wash, but didn’t.  And with the weight down, I noticed a spot that didn’t feel right.  So I felt it again, tried the other side, and felt again.  There it is, a largish (approx. 2 cm) smooth oval.  I didn’t tell hubby, since I was afraid he’d go into panic mode, and I wouldn’t get to go to work, and I had meetings I wanted to get to… but I did a little research online.  What I felt sounded like a cyst. OK, cyst. I can totally deal with that.
Told the hubby that night, made him feel my boob.  First time ever I’ve had to push for THAT! He felt it too.  After the thing that happened with my appendix last year, I didn’t want to see anyone else at my Dr’s practice, so I waiting until I knew she was back from vacation, and e-mailed.  I already have a physical scheduled for next Monday, but wanted to know if she was OK waiting that long.  She said no.  I saw her last Saturday.
On physical exam, she also thought that it felt cyst-like, but wanted to get a full exam.  Mammogram time.
Yesterday (7/17), I had the mammogram.  This was actually my second one, I went in 6 years ago at age 32 because I had some milky discharge from my left breast quite some time after I’d quit breast feeding.  It came up clear, but there are a couple of things that I wish I’d remembered.
    1. Wear flats.  I think I’ve mentioned this, but I’m a relatively tall woman at 5’8” and I like to wear heels. Yesterday I had on some really cute Tom’s wedges… which made me approx. 5’11”.   This is not helpful to the techs who must manipulate my massive boob in their machine. Plus, you have to stand there for a while, so flats just would have been smarter. The annoying thing was that I had flip flops in the car & just didn’t change.
    2. Wear pants.  Since it was a warm day for Seattle, I wore a lovely pink dress because I wanted to feel pretty & confident.  Which worked until I got there & they told me to take everything off from the waist up & I realized that all I had was underwear from the waist down.  Not a big deal, the gown was long enough, but still, I would have loved the yoga pants that were also in my workout bag in the car.
My appointment was scheduled at 2:40p, so I figured I’d have plenty of time to make it to my trainer at 6p, even with a 45 min drive.  Not so much.
First, they needed additional mammograms in more specific areas.  On both breasts. Twice.  This started to make me nervous.  By all means, let’s be thorough, but really, mammograms do NOT feel good… WTF?  More than an hour later, it was time to go into ultrasound, and there I saw a radiologist.  They needed the additional pictures because what they saw on the initial mammogram made them suspicious. There was not only the lump I could feel, which is right at the skin, but another in my left breast.  And on more spot that looked different from 6 years ago on my right breast.
It went on from there, and I ended up having a core biopsy as well as having two little “clips” put in that would be markers for a surgeon. Me: “But my doctor said if it’s a benign cyst, we’d likely just leave it alone.” Dr: “We are doing the biopsy to be sure, but what we are seeing indicates it is most likely malignant and you will need surgery.”
Oh.
So now I get to wait.  I probably have breast cancer. I will know in the next 12-48 hours. I have an aunt who is a 15 year survivor (so far). As I told my mom, if I have cancer, I will just have to be a 50-80 year survivor.  If I still want to be alive when I’m 118.
But I can’t help wonder if this Saturday will be the last time I’ll have a birthday party for my son.  And even not, how I will function when the view from the top is no longer my cartoon-like K-cup boobs. And all I can really do is wait.
I’m not really a very patient person… but stay tuned.  Perhaps this big girl will be trying to beat cancer. Sigh