Moving!

I know, I know, it feels like we just *got* here... however, this was set up in haste, and people are having problems with the site, being able to post comments or follow the blog - so we're moving.

You can continue the story over here:
http://tastethefireforyourself.wordpress.com/

benign!

Yah! I get to keep my breast! altered and proud.... :)

no results today

this sucks.

I''m going to try to use this:

https://www.lotsahelpinghands.com/c/641173/

for making life easier.  If you want to help out, and you're not on the  list, send me your email addy before the 11th and I'll add you in. After the 11th, you'll have to check in with someone else for a while.You can pick and choose what you want to do and avoid unpleasant tasks or the ones that don't fit in your life... I'm hoping it will work out well for everyone.

And, if not, we'll scrap it, k?

Another quick note

I want a better place to blog - this site seems somewhat limited as to options. Could be I'm just stupid & stressed, but I've definitely seen better.

Suggestions welcome... I'd just move it on over.

A quick note about 'going public'

Why ever not? Don't my friends deserve to know that something major is going on with me? Shouldn't most folks know that if I'm cranky or crabby or distracted or weepy or simply needing (a lot) more help for a while, that if I skip obligations or fail at keeping promises, that there's very good reason and it has *nothing* to do with them?

There's no shame in this, any more than there is in having the flu. For nine bloody months, if I'm *very* lucky.

And I'm going to need help, and lots of it; I'm going to be crabby and cranky and a terrible patient, because I always *am*; I'm going to be weepy and distracted; I'm not going to be able to do half of what I'd planned to do this year; I'm going to forget important things that I should remember; I'm going to forget my manners; and for as long as this goes on, I'm going to be hideously self centered. I'm going to be on drugs.

Take the worse case of ManFlu ever, and I might match it.*

There's a reason for it. Trust me, this is not the reality I want, this is not who I want to be, and breast cancer is not the sole defining facet of who I am - but for the next period of time, it will be the defining factor in my life. There's no point in keeping that a secret.

The more people in my life who know, the more support I'm likely to garner - and can I just say, people have almost uniformly been amazing so far -  and the easier it will be for everyone.

And let me apologize in advance for my behavior in the months ahead, because I *know* I'm going to need to; let me thank you in advance for putting up with me, and for helping me out even when I'm being ridiculous and frustrating and whiny and needy beyond belief. For dealing with this with me, and helping me deal with it on my own terms as much as possible. It's a mitzvah.... just  think of the brownie points you're earning!

And you are all beloved in my life.






*let's hope NOT!

The Day After

Doesn't suck as bad, and I've finally been able to wear a bra an entire day without it giving me utter fantods - sometimes a little compression is a *good* thing.

Met with oncologist and radiation therapist today... a different radiation therapist than the one for mom, as it turns out, but she seems very good. I suppose it's one way to get tattoos - I'll get three; one on each flank and one dead center to help with alignment for the treatment. That's months off yet, though... it seems the order will be surgery, chemo (and everyone's assuming chemo at this point, though it will depend on the pathology report), radiation, and adjuvant therapy. If I choose the last.

Lots of folks who knew me from when I was in with mom, which was both good and strange. Deja vu all over again...

Pathology results are expected back tomorrow. That's my self set deadline for telling the parents as well, the return of the pathology report - if it's bad news, I want the chance to freak out by myself first; if it's "good", or what passes for that these days, I'll be in a better frame of mind to break it to them.

I'm trying to get things done while I still can. Setting up a care schedule online - currently using 'CareRunner' as a test, but if anyone knows of any other good (better!) programs for managing care,  please let me know. My hope is to find something I can set up with tasks I might need done (laundry, trash, mowing, mail, meals, rides, etc), and let people pick off the whatever fits their schedule, interests, and abilities. The ideal would have automatic weekly/daily/monthly settings, so I could set a task to repeat every 'X' number of days.

Suggestions or volunteers to test out the CareRunner site are welcome.... I'm curious as to how it will work in reality, and I've a limited time to get my act together.

I promise not to flinch

http://www.youtube.com/watch?v=1aXF9DG9FGo

Semi back now, it being a Darvocet sort of night here. This was different than the other biopsy, and it's a lot more painful, a much bigger shock to the system - even before the Lidocaine wore off, my head was blown, that strong shocky feeling rattling my bones down.  I've spent most of the day clutching an ice pack to my chest like a child with a teddy bear, shivers of pain running down my side and arm, the arm itself held tight to my side. Bird with a broken wing...


I didn't get half the stuff on my list done, I couldn't. It is still yelping at me through the darvocet fog, further away and muffled, but present, tracking my movements...

"You will lie face down on a moveable exam table and the affected breast or breasts will be positioned through an opening in the table.

The table is then raised and the procedure is then performed beneath it. 

The breast is compressed and held in position throughout the procedure.

A local anesthetic will be injected into the breast to numb it.

Several stereotactic pairs of x-ray images are taken.

A very small nick is made in the skin at the site where the biopsy needle is to be inserted.

The radiologist then inserts the needle and advances it to the location of the abnormality using the x-ray and computer generated coordinates. X-ray images are again obtained to confirm that the needle tip is actually within the lesion.

Tissue samples are then removed using one of two methods.

• In a core needle biopsy, the automated mechanism is activated, moving the needle forward and filling the needle trough, or shallow receptacle, with 'cores' of breast tissue. The outer sheath instantly moves forward to cut the tissue and keep it in the trough. This process is repeated three to six times.
• With a vacuum-assisted device (VAD), vacuum pressure is used to pull tissue from the breast through the needle into the sampling chamber. Without withdrawing and reinserting the needle, it rotates positions and collects additional samples. Typically, eight to 10 samples of tissue are collected from around the lesion.

After the sampling, the needle will be removed.

A final set of images will be taken.

A small marker may be placed at the site so that it can be located in the future if necessary.

Once the biopsy is complete, pressure will be applied to stop any bleeding and the opening in the skin is covered with a dressing. No sutures are needed.

A mammogram may be performed to confirm that the marker is in the proper position.

This procedure is usually completed within an hour."

The needle is the size of a pencil, the vacuum hisses, there was blood on my gown. Take a picture in black and white, confirm the site, the needle waiting in my breast. Compression, steri strips and mammograms; gauze and ice packs; the samples on their styrofoam tray. My head blown. Tagged and released, pain running down my arm. Raw and shocky.

'Well now that's done: and I'm glad it's over.'

Chef Boyardee

It looked like Chef Boyardee on a styrofoam tray.

What's Missing

From the last post is the emotive content - from the time I found the lump, I've been terrified, off and on. When I was told it was probably malignant, and I called my sister to tell her, I couldn't speak. I've had to tell so many people by now (though I'm waiting to tell my parents until the results from tomorrow's biopsies come back, and I know what's going on) and it *is* getting easier, but it's not easy. It's never easy.


I weep off and on; I wake up some mornings weeping. I fear mutilation. I fear the loss. The effects of the drugs on my pretty pink cerebellum. I can't give blood again. I am going to miss this summer; I am going to miss Scotland. I'm not going to be able to do anything for a while, and I have so very much to do.


And it hurts.... not just emotionally, but physically - my left breast, flank, and arm ache; throb; sting. I thought cancer wasn't supposed to hurt, I thought it was supposed to be slower. It's all happening so fast.


I have so much to do before the 11th, when surgery is scheduled. There's so much I want to do, there's so much I have to do - loose ends to tie up and projects to finish, packages to send. Shall I at least set my house in order? Which reminds me that not only is there the house to set in order, but there's extensive damage from an ice dam over the winter that needs to be dealt with.


If tomorrow's biopsies come back negative, I get to keep my breast - if not,  then I'll need a mastectomy. Sentinel lymph nodes will be taken during surgery. It's big scary potatoes. If I'm very lucky, I get to keep my breast and go through a minimum of nine months or so of hell. It's all happening so fast. 


Also seeing my mom through breast cancer 4 years ago, and knowing what the road is like... hard lines, hard lines. I'm guessing I'm Stage 2a already, based on tumor size, and only if everything else is clear.

I will make it through, I've really no doubt on that - I'd really like to make it through with as much of my breast intact as possible. And please don't talk about reconstruction - I don't want a useless plastic Barbie boob. It's not just vanity, it's that my breasts are a huge erogenous zone.. it'd be like someone telling you they were going to take away a third of your penis glans, but they could rebuild so it looked ok.....sorta.

Not really the same as the original, it doesn't *work*. And this is visible...

So, send the energy out for me, please... it's still going to be a good nine months of hell (and house construction as well.. fml), if not longer, but I would like this small (and let's face it, it is *small*- never been a *big* girl) concession. I want to keep my breasts. They're mine. I made them.

And if needs must, I'll survive.


What I do NOT want from anyone is any blame. O, and any one calling this a "gift" or "opportunity for growth" or reminding me of all the valuable things I'll take out of the experience or *anything* similar in tone or feeling* - I can still break your fingers, just remember that.

That would be a lovely opportunity for growth... really, think of it as a *gift*.


*I heard all of these sorts of things when mom had cancer, and in similar situations... and while it may be meant well, it's just adding insult to injury. I know I'm going to hear some of them, but I'm doing my best on pre-emptive warnings. And I'm sure there will be good mixed with the crap - there always is- but it's still crap. On the whole, I'd rather be in Philadelphia.

It's really going to suck, I'll be ok, but it's going to suck big time. It already does.

start at the beginning

Four years ago, in the spring of 2007, my mother was diagnosed with breast cancer, a form known as Inflammatory Breast Cancer (IBC). What followed was a grueling time for all of us close to her, and most especially for her and her partner - first waiting for test results, and then the enduring of intense chemotherapy, then surgery, then radiation, and recovery. My mother did recover, thankfully - it was a hard hard road to walk, but she made it through.

On Saturday, April 16, 2011, an obvious palpable lump suddenly appeared in my left breast - I'd swear it hadn't been there the night before. It was large (I guesstimated just over 2 cm) felt hot and heavy at first, though not painful; rounded but with an almost webbed texture - and I was terrified. 

First thing Monday morning, I called and got an appointment at my primary care clinic, was examined there, and was informed that, given my presenting symptoms, it was most likely a cyst that would resolve itself, and was referred to the local breast care center for mammogram and ultrasound. 

My appointment was for Friday the 22nd at 10:30. By that point, the lump was decidedly uncomfortable... achy and prickly feeling, all of which supported the possibility of a cyst. Soon after the mammogram was completed, I was told that the mass was highly suspicious; the ultrasound confirmed that it was not a cyst, but a highly irregular tumor consisting of two joined sections, one deeper in the tissue with the other easily palpable mass blooming forth from the lower mass. The radiologist informed me that he was 'leaning heavily" towards the mass being malignant and advised performing a needle biopsy, which was done that same afternoon.

I left at 4:30 - this is the report:

"Left breast findings: A triangle marker was placed over the newly palpable lump at about 9 oclock. Standard views are augmented with spot compression magnification images of the area of palpable concern demonstrating an area of vague architectural distortion without a discrete definable mass. The architectural distortion is located at the site of a solitary coarse chunky calcification which has been present for several years. The architectural distortion is seen to better advantage on the spot magnified images. Additionally, there are some new slightly amorphous and slightly heterogeneous calcifications projecting over the area of architectural distortion on the CC view. These are located about 3 to 4 cm above the palpable mass on the ML view. On the prior mammogram, there are some scattered calcifications in this region. The calcifications have somewhat increased in number since the 2009 exam. There is no rod or branching morphology however. The remainder of the left breast is unremarkable. No mammographically evident enlarged axillary lymph nodes are seen. There is no evidence of skin thickening or retraction overlying the palpable lump.

Left breast ultrasound was performed demonstrating an approximately 19 x 15 x 20 mm hypoechoic trilobed malignant appearing mass at 9:30 to 10:00, 1 cm from the nipple. The coarse chunky calcification seen in association with this mass on the mammogram can also be seen byultrasound. The mass appears to be somewhat lobulated and macronodular. It is highly concerning and likely represents an invasive breast cancer. The remainder of the left breast was evaluated and is overall unremarkable. Left axillary lymph nodes are identified and have a normal internal architecture by ultrasound. Heterogeneous and amorphous calcifications noted superior to the palpable mass on the mammogram could be identified with ultrasound. These are randomly scattered and located at about 11:00, 3 cm out from the nipple. They are associated with minimally dilated ducts which are embedded in dense echogenic fibroglandular tissue by sonogram. These calcifications and the appearance of the surrounding parenchyma would be more consistent benign fibrocystic changes than DCIS.


Impression left breast: BI-RADS category 5, highly suggestive of malignancy.


Recommendation left breast: As discussed with the patient after reviewing the imaging findings, she will undergo ultrasound-guided core biopsy with clip placement later this afternoon. The biopsy will be reported separately.


Right breast ultrasound findings: Given the highly suspicious findings in the left breast, a right breast ultrasound was also performed demonstrating dense parenchyma throughout and scattered subcentimeter cysts and fibrocystic nodules, none of which is viewed with concern. There are no suspicious solid masses in the right breast. The right axilla has a normal appearance."


Three days later, Wednesday the 27th, the biopsy results came back. I have invasive ductal cancer with lobular features. The tumor is both ER positive (60%) and PR positive(40%), with cell nuclei rating of 2. Given the visible rate of growth, the proximity of the tumor to the nipple, and that mastectomy (single and bilateral) has already been mentioned  repeatedly,  I expect rather radical and unwanted body modification in my near future.