1 Down, 32 to Go

Before I begin, I've decided that from now on, my breast formerly known as left will now be referred to as B- and my right will be B+.  Writing breast over and over, it's becoming one of those words like "panties" and "moist", just ew.

Today I started radiation.

I have 33 scheduled treatments.  

I'm not sure where I last left off.  The doctors brought my case before the tumor board and determined that a few things worked against my favor- my age and my type is ER-negative (meaning hormonal medications used to stop growth of tumors are useless for me).  So my doctor feels in her gut that radiation is the best way to keep my percentages and chances as low as possible.  

Last week was the simulation.  They measure, mark, and tattoo you.  Oh yeah, tattoo.  Measurements are to the millimeter and cross-checked.  They adjust the x and y of the table in subtle jerks.  Check again.  

I lay on my back with arms overhead, holding on to bars.  And these people are all up in my business with little rulers and sharpie markers.  

I am slid into the machine and it whirs - kind of like an MRI, this gets the lay of my land, so to speak, so they know at what precise angles to direct the radiation.  

When they have it right, the tech comes in to tattoo me.  It's 4 pinpoints no bigger than a .  One outside B+, one on my sternum, two outside B-.  I asked him for a butterfly or anchor or something cool, but he said his artistic talents are limited to .'s

Yesterday was a dry run.  I am laid on the table again.  The ceiling overhead is painted like a night sky, with white dots for stars.  I'll see this ceiling 5 days a week till mid-December.  More checking, now with laser-level lights from the ceiling x-ing across my chest.  All I can think of is 

They tug the sheet under me here and there to line me up, and take and few pictures from the left, swing the machine over to my right, and shoot again.  The oncologist approves the line-up, and these will be my settings.

Today was number 1.
Same room, same techs.  I say "I feel like I was just here yesterday!"  Then realizing, hey dumbass, I'll be here tomorrow, and the next four or five weeks.  I am not so clever after all.

I am lined up and adjusted more efficiently now.  The rad. onc. places three little patches around B- that will measure the dose I receive.  The machine starts 90 degrees to my left side.  (No more laser lights though!  I was kind of disappointed.)  The room is dim, but when they hit the button to zap me, the room lights flash on.  The machine orbits around slowly to a 45 degree angle to my right.  

As it passes over me I catch my reflection in the glass pane of the machine.  It caught me off guard a bit.  Like seeing myself how all these doctors and nurses are seeing me.  Seeing myself from outside myself.  It's a vulnerable position.  Arms braced over my head, B- hanging out in the breeze with sharpie-x's around the scars.  I'll catch that reflection for 33 days.  Or I could start counting the stars on the ceiling. 

I think this gives me more anxiety because with the mastectomy, it was instantaneous.  I like things to be taken care of NOW.  This is a long, intimate treatment road, and besides any rash or skin reaction, I can't SEE that it's working on the DCIS.  Takes a little more mental fortitude to keep the positive up for nearly 33 days straight...   

Lights out, lights on, treatment done!  Literally 5-7 minutes outside of getting gown on, setting up, almost 20 minutes in to out.

I don't feel anything with the treatment itself, but have been counselled on the skin reaction that may start within the next 1-2 weeks.  Mild reactions such as a tanning or pink tone to the skin, or more severe reactions such as a blistering rash.  Awesome!  There are creams or medications to help.  They suggest I go bra-less whenever I can.  No problems there!!

I grabbed coffee from the cafe counter outside the radiation suite.  I should make friends with the cashier, as I no doubt will be getting 33 cups of coffee from her in the next few weeks.  It's just too easy.  That's how they make you feel better.  All the coffee.  If they only had a bar..... 

I met two older women in the waiting room.  One on her 20th and last day, one mid-way through.  Both had undergone chemo, too.  So far I only have seen older (than me) patients here.  I am definitely the young newbie.  But these women were funny, saying there probably wasn't anyone in the hospital who HADN'T seen her boobs by now. They say these people become like family, because your treatment time is pretty much locked, you'll see the same nurses and patients.  

So I'll see you in 32 days!!! 

  

Negatives are Positive, but Positives are Negative

But positives are still positive!!

So. I guess y'all have been enjoying my blog, and therefore karma couldn't just let this surgery be the end all be all of my story. So there's been a little twist in my plot. 

The last three days have once again succeeded in filling my mind with information and confusion, percentages, and no direct right or wrong answer. 

We went back to the surgeon Tuesday. I've been waiting with cautious optimism as you know, because although I was told the lymph nodes were clean, I still hadn't been told face to "conscious" face. Was this THE end?  My cancer story lasted a whopping 63 days??  

She explained that while my lymph nodes were clear (negative for invasion... This is positive!), the tissue they removed was sent for pathology, and here they found that a small number of slides showed positive margins (positive being negative, not all the cancerous tissue was removed.  A pathologist wants to see a nice border of good tissue around the bad to know it was adequately removed. If the bad is part of the margin, you can't rule out that some was left behind). 

Whomp, whomp.

She says this is not an unusual finding with this type of mastectomy. In short, as you get closer to the nipple, there is not much separating the duct from the skin.  She must scrape enough breast tissue away while still not damaging the skin, leaving it nonviable for repair.  

So my first thought is: Cut more!!  Open my suture, take more out, use a graft to patch!  (Because I'm sure I've seen this on ER  from 10 years ago or nip/tuck and totally know what I'm talking about). She said nothing was attached TO the skin therefore she really wouldn't know where to look.  She said what we may be looking for is microscopic. It could be barely the surface of cells.  

She states that I may now need radiation. 

Hold up. 

The reason I chose to go full monty mastectomy is that all would be removed and I wouldn't need to do radiation. She says, "Yeah......"   I said, "yeah..."

So I get a new doctor. For radiation. 

Next day is back to my oncologist. She re-explains the findings and also says that my case will be taken before the tumor board where they re-examine the slides, determine if this may be a false positive, and discuss additional treatments.  

She also says that this changes my time-frames.  Originally I was going to do expansion. Let that heal and stretch a while, then do the final implant in about 3-4 months from now. She now says that if I do radiation, this is a 5-6 week therapy after all my expansion is done. Then they do not touch the area (she referred to it as the "battlefield".  I like that.)  again for 6 months after radiation is completed.  So now I may not be looking at this being over for another year?

She says, "I'm sorry, I know you were expecting us to say we didn't need to see you again."  Um.... yeah.....

Today I saw my ps for my first expansion.  The tray in the room was set up with a giant syringe and big needle.  This was gonna be fun!

We talked first though about the findings and potentials for my outcomes.  He said, in short, that radiation does damage skin.  It can cause contracture in an area that we are trying to gently expand and let heal.  He said if they determine that the radiation has damaged the skin too much, that they may need a graft from my back to replace skin at the time they do my final implant.  (Again, a procedure I was trying to avoid in the first place.)  But this may mean that this questionable, yet irradiated, tissue is removed in the end. 

He located the port to inject the saline, and held the Ron Popeil turkey flavor injector over me.  "Ready?  I'm going to try to inject 50 cc's, unless you're a wimp."  I like this guy.

This went fine, I didn't feel a thing, and I don't notice a huge difference.  

He said I'm free and clear to do anything physical as long as I feel ok.  Lifting?  He said yes.  I said, no, like LIFTING, as in like..... man weights lifting........  he laughed.  He said I can do anything as long as it doesn't hurt.  I am not going to break anything, make anything explode, or make anything migrate to where it shouldn't belong.

This radiation thing is really a tough call.  Dr. Google says that my chance of recurrence on the left is low.  It also says that there is low chance of occurence of lung or opposite breast cancer from the radiation itself.  So what do I do?? 

Nothing? Ride the chance that what is left will never develop into anything more?  Take the "do everything you can" approach and do radiation to smite what cells are left, and have to live with regular monitoring?  And then if it does recur, what more can you take?  You kinda took it!  Kick myself if the ass years down the line if I develop something else because the radiation caused it?     

All of these are small, small chances.  I have to have more frequent monitoring anyway, so that's a moot point.   But I just feel this was supposed to be a black and white treatment.  Take it all, and it's done.  But I know better than to think anything in life doesn't come so easy.  So I will research, and ask, and think, and pray, and decide.  The right answer for me will come to me, and this will turn out ok.  

I read what someone said in the Runners Magazine I got today and it kind of spoke to me.
  

Running doesn't always answer the big question, 

but it feels like it does.  

It may not solve the problem, but it feels like it does. 

Whatever this is for you, running, yoga, prayer, fishing, you just need that time to sort this out, and things clear out.  Focusing away from all the numbers, risks, percentages, pros, cons, that's why it was a big deal for him to let me get back to doing activity.  It's how I make room for this shit.  

I forgot a little bit about my ps appointment from last week.  Being the beginning of October and Breast Cancer Awareness Month, I was greeted with a pink rose when I signed in for my appointment.  (I also totally took the free pink pen they offered because hello! CUTE!)

There were about 6 people in the waiting room.  Another woman and I had a rose.  (The older man next to me was jealous.  "Hey what do I have to do to get flowers around here?"  Uh apparently get breast cancer.)   

Maybe this is HIPPA-bad, but with this rose you knew who was "in the club".  All this pink I see this month, I have to see that that's for me.  And again, I struggle with this!  Even with a damn mastectomy, I don't feel like I've "survived" or "fought", I'm certainly not suffering.  I'm a new member for sure.  And over the last three days, I learned that my membership is gonna be longer that expected.  So I continue to look at my rose in the vase, and remind myself to be the strength for others that are physically fighting, or fought and lost.  I have a battle scar for sure, but I'm still up and fighting.  And I take pride in that rose and in being part of this club.         

Not Nearly a Mile, But a Start!

I haven't had much to update lately.  I have three doctors' visits in the next three days so I'm sure there will be more coming from them. 

Thursday was a big little victory - they took the drain out!  I saw my ps and he said it was all clear to take out.  Then he said no shower for another 48 hours.  Hey it's been two weeks, what's another 48 hours... but the finish line was at least in sight.  

I asked him how much of this drain tube was actually in me.  He said from where it inserted at the side of my ribs, it went up, under my expander, around the inner border along my sternum, and over the top of the expander.  So what I thought I felt all this time as the top and inner edge of the expander, was actually hose.  I think like 7 or 8 inches!

So I lay back, and he said "Take a breath" and I sucked in all this wind and squinched my eyes shut and waited for this - whatever this was going to feel like... but it was nothing!  He and his assistant burst out laughing and I said, "Oh!!  That's it?"  

He also noticed some skin irritation from my garment so he said I could swap to a soft sports bra intermittently.  Thank you Lord!!!  

We start expanding sessions next week.  I don't know what this might feel like.  I imagine back to when I had braces, and when they'd get tightened and adjusted your face would hurt so much.  That would also be the day my mom decided was a good day to squeeze my cheeks in displays of affection.  Let's hope she refrains here.....  (and she'll be all mad I said that lol)

This weekend Chris and I traveled back to our old stomping grounds of the Finger Lakes of NY to see our friends run the Wineglass Marathon.  I set my alarm for 4:15 am and rationalized that it was 48 hours and showered like I'd never showered before.  It. was. so. nice.  Burned up all that hot water yes I did.

We spent Saturday winery hopping and just enjoyed the area again.  Definitely felt good to get away.  Only had to reassure Tyler a little that I was NOT going to the hospital.  Jack told him in an exasperated tone, "They're going to wineries."  Apparently to him, I'm either found in a hospital or winery.

We sat at the last corner of the marathon course before the stretch to the finish.  Man did that make me want to get out there again.  

A man, blind, came around the corner, his hand on his partners shoulder, as she had led him through the course, narrating the path and what was ahead.  His time was amazing!  Couldn't be the first time he's done this.  I just watched him as far as I could down the road. 

People of all shapes and builds running, and where we sat was the best because as they rounded that last corner they saw the finish.  You saw faces change to that of  grit and determination, faces burst into smiles and arms raised high, faces crumple into happy tears, and that one guy who started smacking himself in the face..... whatever gets you through I guess.  

I made my way closer to the finish.  As my friend came close, I was that girl, and jumped out and waved moronically at her, and I couldn't help it- I ran with her.  In my flip flops and jeans, I ran with her to keep her going and push her to the end.  And she told me she had happy tears and stuff about what I had been through and I was like what?!  hello!! marathon here!!   

I then realized I was just inside the finishers' chute and I didn't want to be that asshole, so I braked and got out quick before they tackled the crazy girl.

My other friend came through soon after.  And I hugged her hard when I found her.  This was her first (and last lol) and she said she felt done at 11.  But she forged through and did amazingly well.  I'm so grateful to have been able to up and see them.  The whole environment did wonders for me.  

I say I want to keep doing these things because I can, and really after seeing some of these amazing people, knowing for some, their stories are longer and harder than mine, I also want to do it while I can.  Lots of friends suffered losses and family scares these past couple weeks.  And one said she just keeps remembering that life is short!   Too short for drama and wasted time.  Things can change in an instant.  This weekend I went more Ferris Bueller and stopped and looked around every once in a while so I wouldn't miss it, but today I want to fill my calendar with events.  Goal to goal.  If something comes up, I'll reschedule, but I'm still here to DO something.