For Better or Worse or Drain Hoses

Tuesday was my first follow up with the ps.  I spent the previous three days laying, obviously, and literally, very low. During the day I don't feel that bad, nights are rougher.  I am a "left side only" sleeper and that's off limits now. They recommend sleeping on my back and elevated. The main pain I get is in my back.  And my ass was STILL numb so that was killing me too.  I reserved the pain pills mainly for the nighttime.  Chris has taken to sleeping on a cot next to the bed. I have to sleep on "his" right side of the bed to get out if needed.  And he twists and turns all night and is afraid to hit me so he relocated.

It's surprising how much you need your left arm to sit up and get out of a bed!  I'm getting the hang of it.

I was very apprehensive about this ps visit.  Up until now I haven't looked at myself, the bra hasn't come off, even to squat bathe.  When I'm walking into something not knowing pretty much what's going to happen I get nervous.  This has been a big lesson in relinquishing control of the situation.

I needed to change into gown.  I was told they'd remove dressings.  The med assistant did the first few, which involved taking off the bra, and of course I say "ok" in that completely shaky voice that screams yeah, go ahead and do it I'm totally cool with that.  She said if at any time I needed a break she'd stop.

She took it off and my eyes immediately went to everywhere else BUT my chest. Chris stayed very respectful and glued his eyes to Farmville on his phone. He's serious about his farm.  But I appreciated his respect so much.  She was quick and said the ps would be in to remove the one around my drain.  He came in and checked everything quickly.  Removed some padding around the drain but replaced it with some gauze between the hose and my skin.  Said everything looked good.  He said he was able to fill the expander with about 180cc of saline so that I did have some form there.  

This guy cracks me up.  He asked if I had questions, and I asked in that quaking voice if everything was ok - translation - Did they get everything out, is my lymph node clean, what does all this mean???  I said I hadn't talked to my surgeon at all since before the surgery.

He says, "Yes you did."

I say, "No I didn't."

He says, "Yeah! You did!"

I say, "Shut up!!  When?"

This probably occurred in the aforementioned roofie twilight.  Where she told me everything turned out ok.  This is what she told Chris.  But yeah, not recalling this.......

Let me tell you that Chris has been the friggen bomb since we left the hospital.  Brings me my meds on the clock, sleeping in the cot, chauffeuring me to Target numerous times for entertainment, getting the kids ready for school, and cooking.  Amazing.  

He also has been taking care of comforting the kids with all this.  You think they don't get things.  They do.  You think you're carrying on as normal to shield them.  You're not.  Ty is forthright with his feelings.  When he gets off the bus, he wants to know if I'm there.  If they are getting watched by my parents, he wants to know if it's because I'm going to the hospital.  He asked me straight up-

What did they cut?

Where did they cut?

How did they cut it?

Will it come back? 

Did you feel it?

Jack holds all his stuff inside, but you know his wheels are turning.... working with him takes time.  My sweet boys. 

Two nights ago he had to change the gauze by the tube.  And while I was about the pass the hell out seeing a tube just hanging out my chest, held in with some stitches, he changed the gauze, stuck it with some teddy bear bandages (that's all we had, another trip to Target yay!), and padded it with another piece.  He said my theatrics made him more nervous than doing it lol.  He rocks.  

At some point I'm going to have to check out what's going on "there".  Without the dressing I see I have one 3 inch incision in my armpit (it's getting Survivor-style now, oy) and one straight across the breast.  So far I kind of only look down into the bra to see.  I can definitely feel the expander now, and things are all kinds of lumpy in there.  So at some point I have to put on my big-girl pants and just look.  And accept what will be the new me.  My friend reminded me that this is not what the end result will be.  It's going to get better, even though it won't be perfect.  

She said, "Mine aren't perfect, nor is my ass.  Go shopping."  

Wise, wise words. 

I'm Here!

Well that part's over and done with!  I thank all of you so much for your prayers and good vibe thoughts. And even some of you who told me you have loved ones going through something similar. And another bunch of you told me what runs you were doing this weekend and I love seeing you guys kill it out there!!!

I do not know what happened Friday. I lost like 8 hours of my life. The last thing I remember is being wheeled back from nuclear medicine to the room where Chris and my mom were waiting, about 8:15 am... I was all awake... Then it was 4 pm and I was waking up in recovery. So apparently I was also roofied.  I thought for sure I was going to see the OR, and do the count backward thing till I went to sleep, but no, roofied time warp.

Before I write more, forgive me for spelling errors, my one pupil is dilated (my bad) so the screen is a little goofy.

Prior to everything, I am taken to nuclear medicine.  Here they numb around the breast and then inject it about 5-6 times with the isotope that will travel to the sentinal lymph node.  While in surgery, the surgeon uses something like a Geiger counter to locate it, and dissect it, to determine if any cancer is in there, which I believe would make you Stage I.  They test everything there, while you're out, to make sure they secure that no cancer is left or determine if it spread.  

So like I said, I remember getting wheeled back to pre-op.  Here they start the neverending buffet of meds.  Zofran for nausea, a patch behind my ear to ward off nausea and dizziness (this is what blew up my pupil), and a Xanax.  That's some good stuff.

I meet my anesthesiologist.   OK, so his name is Dr. Ringering.  His phone rang with that old-school ring ring-ring, and he answers it "Dr. Ringering" and I thought he was joking, but no, that's his name and it sounded so funny to me.  And I wasn't even that hopped up yet.  He thought I was answering him too alertly though, and gave me more Xanax.  Go to sleep little girl.....

Literally cut to 4 pm.  I was apparently in post-op about 90 minutes.  And they wheeled me back to my room.  I was on the maternity floor, but there were no babies... Boo.  

The next hours are fuzzy.  The kids came to see me.  Tyler was so sad!  But by then I was awake and alert and sitting up so I probably didn't look all that bad.  Jack's the observant one, asking how I felt and if I was ok.... 

My surgeon had to be out of town the day after so I didn't get any info from her but she told Chris that my lymph nodes were clear, no invasion.  So if they took my breast, with everything in it... then I might be clear???  I don't want to anticipate this yet till I hear it from her mouth..

So, what do I feel like, look like etc...  They brought no sexy back with this big bra, so that's on me for the next few weeks.  I also have gauze and padding all up in there, so actually it still looks like I have some boob.  I have one drain clipped to my side, which my hot male nurse is helping me with.  

The area generally feels tight.  Like sore to take in a big breath.  I can feel the top edge of the expander under my skin.  I know I have at least two incision sites but I can't see much else.  

The anesthesia stays with you for a little while.  They removed my cath at 2:30 and by 10 I still hadn't peed.  I tried and tried.  It's like, it was right there but wouldn't make the exit.  So they had to recath me.  So my bladder wouldn't explode.  So.  Pleasant.   Anesthesia doesn't let you feel like you need to pee and messes your Kegal's.  So we had to give it more time. 

The next morning, after prayers to the God of Urination, I walked some laps and finally let in rain!!  So I said, I'm good to go. 

Right now, I don't feel that bad... I think because with the padding I still look like me, but when I have my post-op on Tuesday and if they change my dressings, and I catch a glimpse of what it looks like, I may have quite a few different feelings.  

Yeah, so Chris helped wash my hair in the kitchen sink, and I think the water ran over that nausea patch and into my eye, because later when my friend came by and she and Chris were talking with me, she said, "oh my god your one eye is totally dilated!'  Yeah, this is a good look.  Don't know how long that'll last.  

This has definitely been a "one step at a time" thing.  I can't get anxious about something two days from now.  I think, so far, given everything, this has been better than expected.  So I'm just going to do what I have to do to heal up and recuperate and get back to it.  

What are my restrictions?  No driving for 2 weeks.  No lifting the arm above shoulder height.  No lifting over 10 pounds.  I would like to lift 6 ounces of wine, but I gotta let the Percs wear off.:)  

Again, I thank you sooo much for your thoughts and prayers.  I'm already planning my events for next year.  I also got Double Dog Dared  to do a triathlon if my friend does a half-marathon.  Game on, sister.  I think its so important to have a goal in mind when yo're going through something like this.  It's so easy to think that an obstacle like this can derail you.  So many friends we're running this weeked and said they dedicated it to me, which is so humbling!  I'm carrying on with my goals for those that lost their battle.  If I still CAN, I WILL.  

I may have you, Cancer, but you don't have me. 

The TMI I'm Up To Tomorrow..... Fair Warning!

"I am way late but thank you all for the birthday wishes... And for your concern/advice regarding bat squatter. I am here merely for your entertainment lol.  37 was truly an amazing year of firsts and 38 will no doubt bring more and some repeats I'm sure. "

Do you remember when I said that? Of course you do, y'all hang on my every FB status update.  That was July 15th.  4 days after my birthday and the same day I had a needle biopsy on my breast for "calcifications" seen that were not there on my October 2012 mammogram.   

July 15 Tuesday

The biopsy involves lying face down with your (my) little boob being pulled through a hole through the table and then clamped there... while they drive a needle up all in that.  And don't move.  Fun times!  Results in three days they say.

July 18th Friday

I'm at work in Hartford.  My phone rings before 9 a.m., the office doesn't even answer a phone till 9:00:01.  

 "The doctor would like to see you at 10, can you do that?"  

Uh, noooo.  I can't. I can do Monday... can you just tell me what's up so I'm not waiting all weekend?  
"Ummmm, nooo, are you SURE you can't come in today?"

Cue: about to throw up, crap my pants, whatever other bodily function is about to let go... tell my boss I need to leave like, now, crying... no one has ever seen me cry here.... 

Cancel my day, make a 3 p.m. appointment.  The nurse does the standard height, weight, blood pressure (probably 563/200).  I know what I'm about to hear... just effing tell me already....  The doctor comes in.  With THAT face.....

She tells me I have DCIS.  Ductal Carcinoma In Situ.  She says its Grade 0.  But not much else, or she did and I heard none of it.  She told me not to Google it.  She has already made me an appointment for Tuesday with a surgeon.    

I went home and Googled the shit out of it.

I'll give you the simple definition. DCIS is stage 0, meaning it has not invaded anywhere else.  It is contained in my ducts.  Because it hasn't invaded anywhere, that we know at this point, I will not need chemo. The recovery rate is excellent.  The recurrence rate is low, and even lower based on treatment.   

July 22

I meet my surgeon.  She is very nice, very thorough, compassionate, answers all my questions.  She says I will need to meet with an oncologist and plastic surgeon.  I may need gene testing.  She schedules me for a bilateral breast MRI.  The super nice front desk woman says she is my "appointment coordinator" (fancy!) and tells me to go buy a nice year-long appointment book.  She has a huge drawer of every. other. doctor. in. Connecticut. appointment cards, and proceeds to book me a consult, an MRI, and follow up.  I write it all down on a nice Post-It Note. 

July 26

MRI - nothing fancy.  More face down, boob hanging, don't move type of stuff.  Didn't know my new wrist tattoo was TOO fresh and was told "if you feel it heat up let us know quick" Awesome.  But my arms are extended over my head and out of the machine, Superman style, so no spontaneous combustion.  Crisis averted.  

July 30

Meet my oncologist.  She is also very nice, crazy knowledgeable.  Fills my brain with percentages and numbers and if/thens and I nod, and nod, and pack all this latest new information somewhere in my brain.  She draws my whole family tree on piece of paper in her own code.... noting there's no cancer anywhere in my family besides my gramma, who had a different type.  I'm the only one.  She feels a lump in my abdomen, but is the 4th doctor to not feel a thing in my breast.  There's no "lump" they all tell you you will feel on your self exams.... 

She shows me the MRI. During the MRI they inject you with a dye so as she goes through the slices, my left side lights up with uptake, not just a little- like the little spot where they needled me, a lot. Patchy, fuzzy white, scattered like snow over my upside-down mountain (molehill) of a boob.  Nothing on the right. Nada.  She says the area is quite extensive.  My boob is not really that extensive. (It's all bra.)  This plays a role in my treatment.  

She draws my blood for a $3500 gene test.  If I have the BRCA gene, my chance of recurrence of some type of breast cancer is 80%.  I can choose a prophylactic bilateral mastectomy.

She sends me out for an abdominal CT scan because she does feel a lump in my upper abdomen.  Sure, why not... my insurance is already smoking... and it's probably poop.  But it has a pulse... I'll take abdominal aorta for $200.

August 6

Back to the surgeon.  She also feels my aorta/poop lump, but also says it's my pulse, I'm so slender she can press it against my spine.  ($200 to me!)  And we discuss treatment.

Again I'll simplify:

A. Lumpectomy and radiation.  She doesn't recommend this as again, the area in question is extensive, my boob is not.  This would not leave me with a good aesthetic outcome.  They have to ensure clean margins, use wires to bracket the area... it's like trying to clear out all the diseased branches of a small tree, but still keep the shape of the tree, and you can't tell where the disease start and ends....  so option B. is 

B. Mastectomy with Immediate Reconstruction.  Basically take the whole thing and start the process to reconstruct immediately.  How do we reconstruct this bad boy???

a.  Take a flap of skin and muscle from my stomach, tunnel it up under my skin, and make a boob out of it

b.  Take a flap from my back, tunnel it around to the front, and make a boob out of it.

c.  Insert an expander, like an deflated implant.  I go weekly to have it injected with saline to make room for a final implant about 3-4 months after this first surgery.

She states c. is my best choice as I do not have enough skin to spare to use from my stomach or back.  I may disagree lol, but these other options also involve much more surgery time, recovery time, and an impact to totally unrelated areas that I don't need to be messing with. I need my back and my core all in working condition to get back to doing what I love. (Lifting heavier than the dudes next to me at the gym ;), mudders, spartans, half-marathons (because I'm done with those full ones..... oy)

August 13

I have a dentist appointment.  I have been to this dentist twice a year for 35 years?  My cousin was my hygienist forever and now works front desk.  

"Any new changes to your medical history?"

It's like crickets chirping and a deafening roar all in my head at the same time...

"Uh, cancer?"  I don't have a single goddamn cavity in 38 years.... but I have cancer.  

My visit is fine, and I tell my cousin.  And then I go to meet the plastic surgeon.  

This dude is also super nice!  Tells me how it's done.  Takes pictures.  Buck nekkid except for "medical undies".  Worst DMV license pic EVER!! This is what it's come to huh?? Takes measurements.  Shows me a snazzy Powerpoint.  I feel samples of implants.  Can't drive them off the lot though.  

September 3rd and 4th and 10th

I go back to the oncologist and she tells me my gene test is negative and my genes aren't mutant and therefore the 80% is back down to 10% and less with mastectomy.  She cannot recommend a bilateral because there just isn't anything there and my stars do not align to suggest it will happen again.  I agree.  I was all gung-ho ready to go all Angelina on them, but a few weeks of thought settled my itchy scalpel hand and I am resolved to do only what needs to be done.  

The surgeon agrees, and we're hammering down a date.  They think it'll be the 23rd or 25th. Three days later they tell me it's the 19th.  

Shit just got real.

The plastic surgeon just needed to know single or double, tells me to order a sexy chastity/compression bra that zips up to my neck, and asks what I like for pain meds?? (Whatever goes with a nice vin d'box.)

So this is the quick (or not so quick, sorry!) summary of "What I Did On My Summer Vacation".  I figure this hits all questions up until surgery, because I definitely don't know what to expect when I wake up.  

Please know that while what I write is layered with classic Amy sarcasm and my sprinkles of eloquent language, this is only my way of presenting in a way to lessen the "drama" so to speak, and by that, I mean, I am NOT writing this as an attention-seeking woe-is-me story.  I'm trying to leave it pretty cut and dry, with the where, what, when, and how covered.  I'll put a little blurb on FB but that'll be it.  Anything else I'll write here.  Please feel free to ask me anything too!  More and more women are being affected by this- many people (myself included) though that I was the last person to get something like this.... someone said they thought I was "invincible".  Hey, I haven't asked once, "why me".   Why NOT me?  

I'm taking this as it comes, it's out of my control, the only thing I can control is my attitude towards it.  

My doctors have literally been amazing.  Compassionate, thorough, and excellent communicators between each other and myself.  They don't leave the room till my questions are answered.  As a Doc myself, it's been strange to be on the receiving side of the attention and "fuss" but they have made this journey as comforting as can be.  And as a Doc, I'm partly an educator too, so I write this to also inform you of what this situation has been like to this point, so should you or someone you know one day be also diagnosed with a type of breast cancer, I can give you a small insight to what to expect.

Again, this is how it's been for ME.  This is a completely individual disease for every single person affected.  They are always still learning about how this disease works and grows and changes.... it is a daily fight.  For some, this fight is so. much. harder. than mine.  I don't begin to compare myself to those women who have fought for years, been physically sickened and weakened by chemo, and still got up every morning to care for their families.  Mine isn't shit.  

See you when I wake up!

Every new beginning comes from some other beginnings' end.