Weight Off My Shoulders, and Up in the Air

I.  Am.  Done. 

33 radiation treatments done over 6 weeks.  It seemed like it was going to be a long time, and then - it was over.

B- looks rough but actually fared better than the doctors and nurses expected.  The skin is red, peeling, dry, like a good sunburn.  The scar area is contracted.  And even though I'm done the effects continue to work for about two weeks, so it may continue to cook on the inside.  I said to Chris that I seriously feel like B- is warmer to the touch that B+.  I suppose that makes sense.  It's just strange.

I had my last day of radiation all planned out.  It was supposed to be Wednesday the 17th.  Be done by 8:30 am, grab a coffee, and head to the spa to use a gift certificate that I've been holding on to since May.  It was for Mother's Day/post-Marathon treat.  Of course with a marathon if you get through it with all your toenails intact you're lucky.  I did not, definitely bruised, sore, and I lost 1.5 of them.  So pedi had to wait.  

This last day was gonna be IT!  But Monday evening they call me to tell me the machine had broke, and a new part was being installed the next day, so no patients could be treated.  That bumped my last day to Thursday, and I would get to treat myself on my last day to.... work.  Whomp whomp.

I had one last check-in with my doctor.  I could only ask her, "what happens now?"  She said they continue to monitor, both with scans and with palpation.  And that just seemed, after all this, so... simple?  And my inner voice kept shouting at her, "NO ONE FELT ANYTHING IN THE FIRST PLACE!!"  In my head, by the time someone (someone, lol, anyone, random stranger) is feeling something on me, it's gone too far.  And this tucks back into the little box in my head labelled "scary stuff". 

We shall see.

But after that last day, I felt a sense of relief and freedom that I hadn't felt in a long time.  Everyday from July 18th to December 18 was CANCER.  And somehow that day, leaving the hospital I felt DONE!  I have a bunch of appointments in January.  And I know obviously it's not over.  In a minimum of 6 months I start a process of reconstruction.  Can't be setting of metal alarms forever!  But that's gonna have to fit around some planned activities.  (more on that later!)

I've gotten back into the gym.  It's been interesting to analyze myself and where I've gotten weak.  Seems to be my shoulder and chest is getting stronger, by oddly enough my right shoulder and core are not feeling 100%.  Can't hold planks like I used to, and my right shoulder fatigues quicker now.  Just things to work on.  

In the gym last week, I was doing shoulder press.  Chris was spotting me since my left shoulder is still a little wonky.  Did 25's no problem. Did 30's not bad.  Tried 35's.  These used to be no problem.  But I could feel the left getting goofy and I relied on the support of the seat back.  

An older man came up to Chris as he was re-racking my weights (that's what the trainers should do lol)  He told him I should lower my weights and bring my seat angle back, he said I have a weak back.  Chris said thanks, and the guy walked on.  Chris told me what he had said.  

"Weak back!  No shit Sherlock, I have half a chest too!  
Whadya recommend for that!"  
(Again my shouty inner voice.)

I picked up the 40's .  (Because I'm spiteful.)

I put them back down.  (Because he messed with my head.  And they were heavy.)

Not happening today.  Probably next week.  

I thank you all so. much. for reading the post on Baby Gavin last time.  The prayers and any donations you sent are an amazing blessing for him and his family.  I know he got to spend Christmas at home.  And back on with the fight they go.  

Cancer is Bullshit

I'm so full of thoughts and emotions that I'm sitting in radiation right now typing this out on my phone because I have to get it out. I don't know what to do. What to think.  It's kind of an angry helpless mix.

I am about to be done with radiation next week. Leaving with not much more than a peeling sunburn-like irritation. I show up, I lay down.  Zap zap.  I'm out.  10 minutes in and out.  On with my day.  My sports bra bothers it, I take it off. Simple as that. I bitch. I moan. I can do whatever I want.

Mine ain't shit.  

My cousins' son is 4 months old. (She's my husbands' cousin technically. Whatever.)

His name is Gavin. I haven't met him yet as they live in Vermont. He's cute as hell.

He was recently diagnosed with AT/RT. Atypical Teratoid Rhabdoid Tumor.  A congenital brain tumor. 

He is 4 months old.

He had a surgery to remove the tumor they felt on his neck. He has had scans which have shown that this aggressive cancer has NOT spread so far.

He is about to start 18 weeks of chemotherapy. Mainly in-patient. Then he will need a bone marrow transplant.

He is 4. months. old.  

He will receive more weeks of chemo than he's been on this earth at this point.  

His family will be separated. Mom will stay often with him in the hospital. Dad will carry on at home with their two other kids.  Losses of income, stability.  But you can't look at that little face and have any loss of faith and hope and will.  

You know I say "why not me", like I'm some badass.  But all I can think right now is "why?"  And I want to do something. Anger is a great motivator.  

I've already taken some steps; adding a new chapter to my book.  Maybe I'm rewriting it.  

Holidays are tight for everyone.  God knows I know.  Click here for

Team Gavin's Support Page

If you can donate to this family,

if you can donate to some family you know who is fighting,

if the most you can do is pray for this baby and any other, every other,

then you are helping.

I Might Have Left Out This Info - More TMI

Day 11 of radiation tomorrow!  A third of the way there.  B- is doing ok; getting a rosy tone, no middle of the night glowing as of yet. 

 It occurred to me that over these last posts I left out a rather important piece of information.  How I figured out something might be wrong in the first place.  

I mentioned that when 4 doctors went to second base on B- while in the midst of my testing, none of them felt a lump.  And all women are told to do self-checks to feel for lumps.  

So this goes back to May.  The day before I ran the Buffalo Marathon.  We were staying with my cousins.  I decided to hop in the shower.  I took off my bra and noticed a small stain like dried blood inside the cup.  So I'm looking at myself and I don't see anything, no cuts, scratches, I certainly don't shave there...

So I squeezed gently at the nipple, and out comes a pink/orange blood-tinged ooze.  And naturally, I'm like,

"Oh that ain't right."

I'm not nursing anyone here.  Nothing should be coming out of here anymore!  This doesn't occur on the right side.  

So after the shower, I sit downstairs and do what anyone would do-

Google the shit out of it.  

 The differentials are from the mild... to the cancer..... Dr. Google thinks everything is cancer.  

Exactly what I want to read before I need to go RUN A GODDAMN MARATHON.  I need all my mental focus to just not shit myself by mile 19..... or 2.  

Regardless, I put it in the back of my mind through the marathon.  And running a marathon makes you forget a whole bunch of stuff.  Like your name.  I finished with a smile and a release of tears.  It's so emotional!  I was so proud of what I had just done.  Chris had finished a while before me and was there to greet me and all I said was, "I want to go home."  Skip the post-run beer, I sure as hell wasn't getting any time awards, I just wanted to go home.  It was ah-mazing.  

I had postponed my physical from February to early June because of training.  It's interesting to think now the pieces that fell into place and the timing to how I discovered this.  I wouldn't have noticed anything in February, and would have had nothing to say to the doctor out of the ordinary.  I can't even recall on breast exams at the doctor or gyno if they squeeze your nips to check... 

So with the physical in June I mentioned the discharge (another one of those 'ew' words).  It was consistent.  Don't think I wasn't now regularly squeezing that thing to see if it was still happening or I had imagined it.  She cultured it and it was negative for whatever it could be positive for I don't even know.  My gyno thought it was likely a  90% chance of being a papilloma - a benign growth affecting the duct, easily handled with a small surgery.  But that kicked off the blood work (negative) and mammogram with ultrasound.  Small calcifications, enlarged ducts, but nothing that screamed "TUMOR" till the biopsy.  And it was not the 90%.  

So lesson is - breast self-exams AND squeeze your nips!  My surgeon mentioned that even if you aren't nursing, yellow or whitish discharge can be physiologic.  But blood is well, blood.  And not every blood (or serosanginous - word of the day) is cancer.  But definitely worth the follow-up.  

But this raised my question to the doctors about the future.  Especially after the mastectomy and the fact that margins were positive so there is SOME very small chance of local recurrence - though lowered with radiation.

"How do I know anything is there when I had no lump and now I'm nip-less, i.e. nothing to squeeze and see??"  

Basically it comes down to mammos on B+, and MRI's on B-.  Skin changes can occur so still self-checks are a good idea, but basically the MRI and I will become pals.  I'll take that day to be nervous as shit that "this is the time something shows", but otherwise keep filling my brain with the good stuff: runs to do, yoga moves to not break my neck with, coffee, wine, books, friends and family, wine....  

But this is kinda true too, 

 

 It's all gonna be ok.  
 

 







 

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.