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I've had several people ask me if there's an easy way to be notified when I write new blog posts and I spent several hours yesterday trying to figure out how to get notifications to post to Facebook.  I don't think that's worked yet, unfortunately.  Will keep trying...


BUT, my dear friend Cindy helped me find a way to allow anyone to subscribe to updates via email.  If I did it correctly, you can put your email in the box at the top of the right sidebar and you'll get an email when I update things.



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Related:
Greg has promised to post surgical updates on Facebook and tag me so that my FB friends can see what's happening on Thursday and Friday.  (I still have to write that post with the details, I guess)



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And while I'm on the technical stuff, apparently not all comments made on this blog are coming through.  :(   So if I haven't responded to a comment you made, it might be because I haven't seen it.  Not sure what's up with that--such a love/hate relationship with technology.

*#$& you, Cancer!

I grew up in a family that didn't swear much.  I'm pretty sure that was due to my dad's influence, and I can only remember him swearing once or twice in my life.  I think my mom tended to use curse words a bit more frequently, and after Dad died, I even heard her use "the F-word" which, though I was in my 30's, still shocked me!

I'm pretty sure I had that junior high/middle school aged period of time where swearing was novel, and I have to admit that as my kids have gotten older, I'm a lot more loose with my words.  But I still don't use a lot of swears, so my first blog post here was perhaps a bit uncharacteristic.

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When our kids were smaller, I was pretty adamant that we not swear around them, and that we correct them when they (inevitably) learned some of the more colorful terms.  However, Greg was equally adamant that they learn that swear words have their place, and that they are powerful words and if you're going to use them, you need to use them correctly and to be aware of their power.

Perhaps that's why my first thought (and possibly my first word) after getting my cancer diagnosis was, "Fuck!"  I have found tremendous power and release calling it "fucking cancer" and saying  "you've picked the wrong bitch" and using other equally colorful phrases.  I think I'm not alone, as a quick google image search of "fuck cancer" turned up pages and pages and pages of images.  LOL!

Yes, words have power, and I'm using all the power I can find to fight this thing.  Thank you to those who have chimed in.   :)

Warning: sappiness (and happiness)

Deciding to share my cancer news was not easy.   I wanted to be sure to tell my immediate family first, but I really felt that I needed support while going through the uncertainty prior to the definitive diagnosis.  And so in addition to (of course) sharing everything with Greg, I chose two very special friends to confide in.  Dawn is my online friend who went through her own cancer journey, beginning over 5 years ago (chronicled at Desiderata).  She told me what would happen before the medical professionals did, and above all assured me I would get through it all.  I would message her with the dumbest questions and worries and she was (and still is) fabulous about talking me through things.  The other friend I shared the news with early is my equally-fabulous, retired nurse friend Kathlynn (blogless, I think).  Kathlynn listened to everything I freaked out about, and was able to tell me (gently) to knock off the panic!  :)  Both of them are responsible for maintaining at least some of my sanity.

For anyone now, or in the future, going through a similar situation, I can tell you that (at least so far) the worst part is by far the uncertainty.  The roughly two weeks between finding the lump and getting the definitive diagnosis was horrible!  And while Greg got the brunt of my freaking out (and tears), Dawn & Kathlynn shouldered a lot of it, too.  I can never thank them enough for that.  

We started telling family on December 17th and I quickly learned that it was really, really hard to see people's faces when they heard the news.  Phone calls were just as hard as I could hear people's reactions on the other end.  I guess everyone was as shocked as we were to find out.  And so other than the kids and my mom, we informed everyone by text or messenger, or email (hello, 21st century communication!).  I apologize to those of you who heard in a non-personal way, but know that I selfishly did it to protect myself.

It was hard to decide when to tell people, and who to tell.  I have enough Finnish blood in me that I don't like to be the center of attention (Ever hear the joke about the Finnish extrovert?  He looks at the other person's feet when talking to him!).  But I knew how helpful it was to talk to Dawn and Kathlynn.  And Dawn encouraged me to share the news--first with a smaller private group, and then with all of Facebook-land.  And (again) she was right.

I have not cried for me since getting the definitive diagnosis.  But I am continually tearing up something crazy due to my amazing friends.  The Facebook posts, the private messages, the text messages, the phone calls--and all the hugs.  I knew I had great friends, but OMG all of them at once, being the amazing people that they are has been completely overwhelming.  I have read and re-read and printed out all of your messages to keep with me and re-read on any bad days.  

Last night I got together with some of my closest friends to celebrate my graduation and to fill up my happy tank with good memories to get me through January.  January is always a rather depressing month, in my opinion, between the cold, snow, short days, and such.  And I will be coming off of 5 1/2 years of Grad School (more-than-a-fulltime-job), and won't be starting my new job until February (more on that later--they kindly pushed back my start date), so will likely be beside myself with boredom.  I've heard the recovery from surgery is not a lot of fun, and it impacts your arm range of motion and strength.  I will also be unable to drive for a few weeks.  I've decided to treat this time as a forced vacation--resting, reading for fun, knitting, watching bad TV, and socializing.  And I filled my happy memory tank to the brim last night.

Though I don't wish a cancer diagnosis on any of you, I do wish that each of you had an opportunity to be as completely surrounded with love, support, and the most amazing good wishes as I have been for the last month.  I keep telling myself to look for silver linings, and you, my friends, are an amazing silver lining.  I promise to make an effort to pay back the good feelings as best as I can--and not to wait for a time of crisis before doing so.

T1cN0M0

Several people have asked for more specifics on the type of breast cancer I have. This post will have all the medical-speak information for those so inclined.  But before some of you tune out, I will repeat my newest Public Health PSA:

DO YOUR BREAST SELF-EXAMS!!!

I have been told by several medical professionals (radiologist, nurses, oncologists) that my cancer would likely *not* have been found this month in my routine, screening mammogram.  [The type of cancer I have (lobular), combined with how early I found it, and then toss in the whole small, dense breast thing...]  Know, too, that the earlier it's found, the better the prognosis.  So do your breast self-exams.  Or have your significant other do them.  Or do them ON your significant other.  But seriously--get to know your breasts (or those of someone you love).

I did not know until my journey began that there are at least 15 types of breast cancer.  Mine, invasive lobular adenocarcinoma, is the second most common, accounting for approximately 10% of breast cancer cases.  The lobules are the area in the breast where milk forms.  The more common form is found in the ducts of the breast--the pathways by which milk exits the lobules.  It (ductal) is more readily found in a mammogram and is more likely to form a "lump" as opposed to a "thickening."  

From Wikipedia

On the "continuum" of breast cancer, invasive cancers are in the middle.  The less aggressive forms are called in situ--they are localized to the ducts or lobules.  The most aggressive form is inflammatory.

So, my cancer:

T1cN0M0

From Cancer.org:

A staging system is a standardized way for the cancer care team to summarize information about how far a cancer has spread. The most common system used to describe the stages of breast cancer is the American Joint Committee on Cancer (AJCC) TNM system. 

The stage of a breast cancer can be based either on the results of physical exam, biopsy, and imaging tests (called the clinical stage), or on the results of these tests plus the results of surgery (called the pathologic stage). The staging described here is the pathologic stage, which includes the findings after surgery, when the pathologist has looked at the breast mass and nearby lymph nodes. Pathologic staging is likely to be more accurate than clinical staging, as it allows the doctor to get a firsthand impression of the extent of the cancer.

The TNM staging system classifies cancers based on their T, N, and M stages:

• The letter T followed by a number from 0 to 4 describes the tumor's size and spread to the skin or to the chest wall under the breast. Higher T numbers mean a larger tumor and/or wider spread to tissues near the breast. 
• The letter N followed by a number from 0 to 3 indicates whether the cancer has spread to lymph nodes near the breast and, if so, how many lymph nodes are affected.
• The letter M followed by a 0 or 1 indicates whether the cancer has spread to distant organs -- for example, the lungs or bones.

Until my surgery, we won't know the definitive stage of my cancer, but right now it looks pretty good.  :)   There is one larger area (estimated to be 1-3 cm) and several smaller areas clustered around it, which may be separate, or part of a larger tumor.

In addition to appearing to be stage 1 (won't know for sure until lymph node biopsies), we also know that it is positive for estrogen receptor (ER+), for progesterone receptor (PrR+) and for HER-2/neu (HER2+).  Those are all receptors on the cancer cell that encourage its growth (bad), but that can therefore be targeted with chemotherapy and/or hormone therapy (good).  Of course, the more chemotherapy, the more side-effects (bad), but if I could do 5 1/2 years of Grad School, I figure I can do a year+ of chemotherapy ;).

The other things that they look for are Ki67 (a cell proliferation protein), and the grade of the cells, based on three factors (T=tubule, N=nuclear, M=mitotic).  These are all measures of the aggressiveness and/or likelihood of recurrence (indirectly) of the tumor.  Unfortunately, my results there are not so good.  My tumor has a relatively high Ki67 score (62, where greater than 20% indicates rapid divisions) and it is Grade 3, meaning that it is poorly differentiated, with the cells no longer looking like normal breast cells, multiple nuclei per cell, and many cells in the stage of rapid division.

What that meant to me is that I wanted to be sure to get rid of all of it, and to decrease my chance of any recurrence.  While the doctors assured me that outcome would be the same whether choosing lumpectomy with radiation or mastectomy, I know that I am a worrier and would not relish the frequent clinical exams, mammograms, MRIs, and worry that would come with saving breast tissue.  Furthermore, my breasts have served their functional purpose, so I no longer feel the need to preserve them at all costs.  

So I chose to do a bilateral mastectomy.  And I will write more on that (and my chemotherapy plan) at a later time.  For now, I need to get to the hospital to do my pre-op tests.

Thanks for reading so far.  :)

Here we go...

I'm not the best writer, but I do feel that I keep up with things like journals when I know that someone else might be reading them.  And so while I've been trying to jot down notes for myself since this whole mess started ~6 weeks ago, it's very disjointed.  Additionally, a dear online friend of mine re-shared her breast cancer diagnosis blog with me last night, and I thought, "maybe I should do something like that."

So here it is.


Mammary Irony for a few reasons.


Mammary:  denoting or relating to the human female breasts

Irony:  a state of affairs or an event that seems deliberately contrary to what one expects and is often amusing as a result



Anyone who knows me at all is well aware that I am a huge breastfeeding advocate--a lactivist.  My years of being supported by, and then volunteering with, La Leche League; my online- and in-person support of all things lactation; my work with the Milwaukee County Breastfeeding Coalition; my desire to return to graduate school so that I could research and promote breastfeeding; my eventual certification as a CLC...   Several (guy) friends refer to me as the "boobie lady" (I won't out any of you).  Heck, when email addresses used to use nicknames instead of real names, I chose my moniker:  bfmomma for breastfeeding momma.  And it's well documented (here, here, and here for starters) that breastfeeding decreases the risk of breast cancer and that the younger you are when you start, and the longer you breastfeed, the lower your chances of developing breast cancer.  Given that I was 25 years old when I had my first baby, and breastfed for over ten years, I was pretty sure I was golden!

Go to the list of risk factors for breast cancer and you'll see:

Family history (no)
Smoker (no)
Drinker (no)
Overweight (no)
Diabetic (no)
Early periods (no)
Late menopause (no)
Age/over 55 (no)
Genetic mutations (no to the 5 most common, at least--I've had the tests done)
Radiation exposure (no)
DES exposure (no)
No children or first child after 30 (no)
Lack of physical exercise (no)
Third shift workers (no)

In actuality, the only common risk factors that I have are being female (yes) and being white (yes).

So it's a bit ironic that someone so devoted to the natural function of the breast (and with little to no risk factors) would have her own breast turn on her.

Furthermore, I prefer to focus on the humor in most situations, and therefore the "irony."  Maybe this is not true irony and is, instead, more of the Alanis Morissette-type irony (that is, just something really annoying), but either way, there it is.

And so I'll document my trip through the breast cancer diagnosis and treatment.  You're welcome to join me if you'd like.

I am NOT looking for (nor would I welcome) pity or sympathy or sadness.  I *do* want powerful, positive thoughts being sent my way--especially on January 8th, when I begin treatment with surgery.  And I would love to catch up with people, given that I've been so non-social the last 5 1/2 years of grad school.  I'm not big on phone calls, but love chatting online or via text, and would appreciate local visits when I'm recovering from surgery and/or sitting in chemotherapy for the next year.  I fully intend to beat the hell out of this thing.  As a friend emailed to me--and I repeat to myself frequently:  

"...to the cancer....fuck you, you motherfucker! You 'bout to get fucked up big time!  : ) "