Scan Results

I can’t really think of a cute way to start this post so I’ll just get down to business.

MRI OF THE BRAIN W/O & W GAD DIFF PANEL:

No evidence of intracranial metastatic disease.   WOOHOO!

PET IMAG SKULL-THIGH SUB TMT:

This one is more complicated and the report was long so I’ll just summarize what the doc told me.  As we expected, my left chest area “lit up”.  He was more concerned about three little lymph nodes in the mid chest area that also lit up.  His concern is that there COULD BE cancer in them now.

Before you freak out – you should know that he prefaced this news with “they could just be lighting up as inflamed from doing their job with healing you from your surgery but…”

Hmmm…  He did warn me to expect that they entire area would light up.  And it did.  The report findings sound scary if you didn’t know I was only 2 weeks out from a surgery where the doctor not only cut away whatever little tissue I had left in the area, but also separated my dermis from the underlying tissue in order to pull my skin together to close the incision.  OF COURSE it would light up.  Let me explain.

The PET scan relies on the fact that glucose is used as fuel by the healthy tissues in our bodies, and also by cancer cells. The amount of glucose used by each tissue depends on its function.

The tissues in the body which are most metabolically active will take up the most FDG (fludeoxyglucose -the radioactive glucose used) . One organ which uses a lot of glucose is the brain which appears very bright on PET scan. Infections, recent surgical incision sites or broken bones will also be bright on PET scan because these areas are very metabolically active as they heal. (Read more HERE)

So it stands to reason that the lymph nodes in questions, the nodes that are closest to the surgical site, would also light up.  Other encouraging news is that the SUV numbers (standardized uptake value -the SUV is just a measure that indicates how bright the tissue is on the scan; that is, how much cellular activity is occurring in that area) for these lymph nodes are fairly low (2.8 -5.1 compared to the big incision areas that were 16.7-24.2).

In the video below, you can see the area light up.  You can see the entire 10 inch incision light up as well.  Unfortunately, the image does not get any clearer than this.

So what does this mean?

Really, it doesn’t mean that much.  I mean it COULD mean really bad things IF the cancer actually has moved into the lymph nodes.  That means its considered metastasized.  Not good.  But I am choosing to believe that my immune system, something I have taken great pains to keep strong, is doing its job and that those poor lymph nodes are simply working hard.

Either way, the next steps remains the same.  Radiation.  The oncologist will call my radiologist to relay the scan results and make sure that she targets those areas.  I was told that was the plan all along anyway.  All part of the nuke Larry to Hell plan.

What I DON’T like is that I’ve been upgraded to from stage 1 to stage 3.  The sound of that just freaks me out.  But I suppose I should have expected that.  After all, Larry has come back twice and spawned a son.  My TNBC is considered aggressive and invasive now that it has spread to surrounding tissues.  Doc Peacock also said “spread to the nodes” which I quickly corrected him on.  Still – even without node involvement he still considers it stage 3.

Boo

So since nothing has changed as far as I’m concerned, please no calls asking me how I am emotionally.  There more people that express concern, the more it freaks me out.  Aside from this cold I came down with, I am feeling fine.  I am finally healing well from that last surgery.  I am glad to see that my immune system is working over time.  I read online of others who had a chest cold at the time of their PET scan also have those center lymph nodes lit up.   So its all good.  The oncologist’s job is to be overly cautious.  And mine has a track record of being wrong before.

So THERE!  I choose to believe that if Larry is still lurking, he is nothing but tiny cells that are already being beaten down by my incredible immune system and will be completely burned out when the radiation starts.  I’m not happy about my poor lymph nodes also being blasted but they will regenerate and come back strong as ever.

May it be so.  Amen!

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Finding Encouragement

“Just checking in to see how you are!”

I’ve gotten several of these messages over the last few days.  This tells me it’s time to write a blog post.  The quick answer is – I’m fine, thank you!  I seem to be healing up well this time and am looking forward to getting stitches out tomorrow.  It will be nice to finally be able to swing my left arm on walks and sleep without stitches reminding my unconscious brain to be careful when rolling over.

Many of you know that I am having tests this week.  Monday was another half day of no eating or drinking anything except water (no morning coffee – gggrrr!).  The PET scan was scheduled for 1pm but once you get there and get checked in, the next step is to poke an IV into you so they can fill you up with radioactive dye.  Then you get to sit in an easy chair for an hour while the dye spreads thru your system.

The best part of this test is that they give you warmed blankets to snuggle under while you wait.  Very nice!  I spent my hour catching up on some reading.  The test itself is pretty boring.  You lay on thin bed that moves you back and forth inside a big donut.  You can read more detail about it in the blog post from my first PET scan (HERE).

Meet Gail OneBoob!

I remembered from the first scan that the clinic will give you a CD of the results.  I know that I am no radiologist and have NO expertise reading these scans, but its fun to look at them anyway.  And now I would have last year’s scan to compare it to.  So of course the first thing I did when I got home was pop that CD into my computer.

The only thing I know about these scans is that anything ‘bad’ would show up as brightness.  Bones show up as white as well. My oncologist warned me that he expects my left breast area to “light up” not because of the cancer that may still be left but because my recent surgery would cause inflammation there.  I remember last year, Larry showed up as a super bright white spot on my chest.

Last’s year’s scan. Stupid Larry

I am happy to report that my completely untrained eye saw nothing that concerned me.  I didn’t even see any brightness where my boob used to be.  Woohoo!

See?  You gotta find encouragement where ever you can!

Sure, I was concerned about these tests and had to stop my brain from worrying about what will be found.  I remind myself that it is what it is and no amount of worrying is going to change any results.  In fact -the stress of worrying only makes things worse.  But I’d be lying if I said that I wasn’t skipping around the house yesterday full of lightness after that worry weight left my shoulders.

Today’s brain scan showed me the same results – nothing.  Ha ha -don’t go there.  I now have PROOF that there is indeed a brain inside my head!  But again I saw no bright spots other than my poor cold inflamed sinuses that lit up.  Encouragement! (Read about last year’s brain scan HERE).

PROOF!!

One’s brain can really be insidious.  The fact that Larry keeps coming back has really messed with my head.  I can’t help but to wonder things like….it’s been over a year, has it spread?  Am I a different stage now?  Will this take me suddenly like I hear TNBC has a bad habit of doing?  If it does, will the new tumors hurt like Larry did?

Ugh!  I could worry myself insane if I let my brain continue unchecked.  I distract myself a lot.  Hours upon hours of marathon Netflix sessions.  I’m reading more books than I have in years.  I’m really losing myself in work during the day.  Anything to keep my brain from “going there”.

In fact, its time to go do that again.  Of course I will write again when a real doctor gives me the results we all wish for.  Please continue to pray.  Once these stitches are out tomorrow I will begin gently stretching in an attempt to even out my torso.  I sincerely hope that this weird tugging on belly and chest is the worse I have to deal with now.  At least the pain has subsided.  Encouragement!

So far this year… sigh

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Surgery #8 completed

“Hhheey girl!” the pre-op nurse greeted me as she walked in my room.  “You are back AGAIN?”  She comes over to give me a big hug.

Yah!!  My favorite nurse was working yesterday.  Not only is Adrienne totally cool, but she also has the lightest IV stick.  Yes, it’s pretty sad that I am getting to know who all the OR people are, but it’s also getting to be helpful.  Though Adrienne was not assigned to me that day, she saw me on the schedule and came to my room as soon as she heard my voice.

She also knows that I prefer HER to start my IV so she offered and I gladly accepted.  She especially likes our room because my wonderful daughter always play videos of hot guys or comedians to distract me from the impending stick -which has not always gone well.  I’m sure after dealing with scared and often surly patients all day, Adrienne is glad to spend some time with the coolest chicks ever.

Yesterday’s IV stick went so quickly I barely noticed.  Woohoo!  But it also meant we didn’t get much time watching the Robert Downey Jr/ Chris Evans interview.  Boo!

In fact, I was surprised when my daughter hushed me as I was joking with Adrienne that I would some day marry my surgeon.  He was already outside the door!  Turns out the OR was running early and I would get my surgery in almost an hour earlier than scheduled.  Another Woohoo!

So doc came in and drew on me as usual.  I told him I didn’t care if he had to dig or take more skin or ‘disfigure me” like he’s been trying to avoid.  I said just get it all GONE.  We discussed what he would have to do in order to close, told me to come see him in 2 days and off to the OR we went.

This time was different too.  I had taken a Valium before I got to the hospital (like usual) but since not as much time had passed as expected, the anesthesia tech did not give me another dose like they usually do just before wheeling me in to the OR.  I guess I was acting chill enough. (Can you tell from that pic? lol)

So this time I remember everything that happened prior in the OR.  The transfer to the table, the strapping down of my arms, the chit chatting the anesthesia doc did while all this was happening.  I even remember the pain in my hand when the IV administered the sleepy juice.  I had time to ask about that pain, get the answer and even felt the second dose go in before I went byebye.

The least crowded OR I’ve ever seen.

The first thing I remember upon waking was feeling nauseated.  That was new.  I told the nurse and she immediately administered the anti-nausea drugs.  I struggled a bit while it took affect and asked her for the magic emesis bag.  I told her I have never once had to use one once it was in my hand and the bag didn’t let me down this time either.  Thank goodness -cuz the pain that also hit me upon waking told me it would be downright to actually throw up.

A dose of whatever pain meds they use helped to dull the pain, but didn’t take it away -which is fine with me.  I don’t mind a reminder to be taking things easy.  I was mostly just super sleepy still.  I was surprised when the post OR nurse said she just needed a set of vitals then would return me to my room.  Wow -that seemed fast.  I swear I was only awake in recovery for maybe 15-20 mins.

True to her word, I was brought back to the pre-op area where they let (make) me eat some crackers and juice before they discharge me.  I didn’t even have time to finish one small of soda before my IV was taken out and was told to get dressed.  I was still feeling drunk, but more than happy to be getting home.  Maybe it just SEEMED to me that I was being rushed out.  I would not be at all surprised if after 8 surgeries my body is finally reacting to anesthesia a little differently.  Or maybe the nurses all know that I don’t really NEED that extra time.

Anyway – as per the usual routine, we stopped at Jimmy Johns for my usual UNwhich that I eat even though I’m not hungry but know I should.  The food and quart of water I make myself drink really does help to “wake me up”.  I was feeling MUCH better within an hour of being home.

I spent the night snuggling on the couch watching TV with the kids.  At bedtime, I discovered that I really couldn’t reach around to milk the drains or fix the tape that was beginning to come lose over my bandages.  Ariel came in to help me.  We were surprised (and a little worried) to see bloody bandages near my armpit.  I’m curious to find out what was the cause of that, but I’m sure it has something to do with the surgeon having to remove skin/tissue much higher than the other times, and the pull skin down (and up from my belly) in order to close.

This night was rough.  I took pain pills religiously.  I woke this morning to a much better idea of where the pain is coming from.  It’s as I expected – separating skin from the tissue below is not fun.  It hurts and it pulls.  I find myself not being able to fully straighten my back or pull my shoulders back.  But hey!  I am happy to deal with this if it means he was able to get the offending tissue off my chest.

Doc is in a big hurry (as am I) to get me to radiation.  I am already starting the “heal up quick” meal and supplement plan.  As much as I hate to be a slug, I will even ease up on my daily walks so there’s no extra pulling on the area.  Doc originally said 3-4 weeks of healing before I can start radiation but I know our goal is the 3 weeks unless I can pull some superhero like miracle and get myself ready earlier.

So please!!  Keep those prayers up!  Prayers for fast healing and a continued positive attitude about it all.  I went thru a bit of a dark time for a while there, but this last surgery went so well that I am back to feeling positive and looking forward to the future.  TGBTG!!

Go ME!!

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Surgery #8 Yea or Nay?

“Aren’t you sick of slicing in to me?” I asked tried to sound light-hearted when I asked this of my breast doctor but we both knew I meant it.  He sort of chuckled and said yes.  Then  he added, “This is the last time.  I promise!”

We both knew he didn’t mean that.  But we wished.

This morning was another surgical follow up appt.  When Doc entered the room, I told him that the wound has broken up a bit yesterday and I was getting some fluid leaking out again.  He wasn’t concerned.  Neither was I -especially since the leak seems to have eased some pressure and I wasn’t hurting as much.

He did frown when he saw the redness in the area I told him still hurt and of course he had to poke at it -which caused me to wince.  I swear one of the days I WILL poke him back!  I said something about the area getting gone on Tuesday’s surgery #8 but he said,

“Oh -that’s been cancelled.  I talked to Doc Peacock (my oncologist) and he thinks we just aggressively radiate the area.”  What??  Really? …was the obvious look on my face.

“I don’t mean to tell you guys how to do your job, but doesn’t it make sense to get rid of as much disease as we can so the radiation can work on killing little cells instead of big tumors?

He considered my question as he poked around my incisions some more.  I added, “Besides, I don’t see how I’m going to heal up well enough to radiate with this owie area.”

He decided I had a good point and went to take a look with the ultrasound.  There is an obvious dark round tumor-looking area underneath that redness.  And it looked scarily big.  He vocalized what we were both thinking.

“Hmm -that doesn’t look good.”

He stepped back and studied my chest again.  He informed me that he didn’t take the area before because he needed skin to be able to close.  I asked him why he couldn’t just pull the skin down that had been expanded in anticipation of holding an implant.  Obviously this is where HE is the expert.  He said there still wouldn’t be enough but said what he would have to do is pull skin up from my belly area.  Though he glossed over the details, this means he will have to separate my skin from the tissue (fat/muscle) in order to pull it up.

Then he met my eyes with a questioning look on his face as if he was asking my permission to go with that plan.

“That’s fine, Doc. Just get it gone -please!”  I no longer care about scars or pain or being lopsided.  And that fat girl inside me DID already wonder if this surgery would make look skinnier.  lol

It was a good thing that his office had not yet cancelled the surgery with the hospital OR so I didn’t lose my spot on Tuesday.  Surgery #8 is officially back on.  I am prepared that this one is going to hurt more with this skin stretching thing so I will try to get my exercise in over the weekend in anticipation of having to be a couch potato for a few days.

I leave in an hour to go to the clinic for a mammogram that will not happen.  Tomorrow morning is the MRI.

I liked it better when I didn’t have any updates to share.

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Pathology Results

I’ll cut to the chase:  Yes, the tissue doc took on Tuesday “was full of disease.”

OK -now that is out of the way.  This news is what I expected.  I don’t want to use the words “cancer is back” because the unfortunate reality is -it never left.  Saying it is BACK makes it sound worse than I want to believe it is.  We’ve known all along that triple negative breast cancer is an evil bitch so we should expect that it will not be easy to get rid of it.

Today’s visit to the doc was a “surgical follow up.”  Yes – a doc visit on a Saturday morning.  I’m sure this is one of the reasons my surgeon is not married.  I was smart and took a pain pill this morning in anticipation of getting my bandages ripped off.  I also pried some of the bottom ones (on the sensitive belly skin) off last night.  The tape had been stuck to my skin for 4 days and I swear it starts to meld with my skin after a while.

Doc was pleasantly surprised to see that the redness between the breasts was gone.  I was surprised to see that he had NOT biopsied the area.  Just before taking off the bandages, he told me that he was certain that the redness was the disease spreading.  I reminded him that I was certain it was related to the expander and was not at ALL surprised to see that it was gone now.  (Yes, I refrained from saying “I told you so”.)

In his typical think out loud manner, he said he would get in touch with Dr. Peacock (the onco) and discuss the next plan of attack.  He thought he may have to re-excise the area again and I could see his brain going through all the timing possibilities.

I told him that I didn’t see the plan changing.  The next step was radiation.  It’s the one thing we haven’t tried yet.  Lets napalm the hell out of Larry!  Doc then said some very encouraging words:  he has seen tumors not respond to chemo but respond very well to radiation.

And I know some women who had TNBC that are cancer free after radiation.   Doc said I will heal up quickly now that the expander is gone and should be able to get to radiation within 3-4 weeks.

He is going to schedule a PET scan and an MRI to check the entire area and make sure Larry is still localized and hasn’t spread to any other areas.  This will also help the radiation doctor to target the areas that need it most.

My BFF points out the good news in all this:  I will get free liposuction!  woohoo!!

I asked the doctor not if, but WHEN I get to the point of getting back to reconstruction, what will that look like now.  He said he’d like to see 6-8 months of NED (no evidence of disease) before we move forward on reconstruction.  This happily coincides with the length of time I would wait after radiation for my skin to be healed enough to withstand surgery again.

He said there was no need to worry about any potential allergy to another expander (he still won’t believe I was allergic!) as he wouldn’t be using an expander anymore.  He said he would now have to reconstruct a breast using my own skin and fat (called autologous or “flap” reconstruction).  Hello liposuction and tummy tuck!!  So there is the silver lining to Larry being a difficult removal.

So next steps are:  get the tests schedule and heal quickly.  I will also look into getting a prosthesis bra as it sounds like I will be Gail Uni-boob for rest of this year.  Clothes shopping has been put off for a year already but maybe once I can fake having an even chest, I will see if purchasing a few new tops or dresses might help me feel pretty again.

Thank you again for all your prayers and positive ju-ju sent my went.  There’s no way to adequately express just how much it helps and how much it means to know you have a loving army on your side to face all this with.

I love you!

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Texting the Doc

After seeing how the redness was getting worse on Sat, I snapped a pic and sent this to my doc:

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Yes, please let us ALL pray!  Today the sore spots are downright bright red and burning painful.  Pray that the pathologist simply finds scar tissue and not what I fear it is.  Thank you.

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Surgery #7 -for reals this time!

“Hello Ms Woodworth.  How’s everything loo…”  My surgeon took one look at my face and trailed off his question.  Instead he asked. “Uh-oh… not good?”

I hopped on the exam table and lifted my shirt.  Yeah -I’m THAT girl.  I stopped using the cute pink cotton patient shirt/gown they provide after the third time I had to bare my chest to this doctor.  He’s seen it all already.  There’s no point in modesty any more.  And since I rarely wear a bra anymore, it always feels a bit like the “show your tits” moments in I’ve seen on Girls Gone Wild or Mardi Gras videos.

He frowns as he looks at my red-headed child of a left breast.  I said, “I think it needs to come out.”  He agrees and lay me back on the table so he can start poking at the incisions again.

“OW!”  I exclaim loudly as he pokes the area I JUST got done telling him was hurting.  I resist the urge to poke him back.  HARD.

I tell him that I had done some research.  I always preface this with the “I know, I know…doctors hate Google but…”  What I discovered on some very reputable cancer websites is that numerous women have had a similar problem.  It seems there is some “mystery infection” related to tissue expanders.

They even coined it a Mystery Infection because it seems surgeons, doctors and even infectious disease specialists have no idea what it is.  Woman after woman described the same situation I am dealing with:  redness, burning, pain and even the same drainage I’ve experienced.  No fever to indicate an infection.  Some have had surgeries to clean up an infection that proved not to be there by pathology – like me.

Some ladies had doctors who assumed infection and treated with antibiotics -sometimes massive doses by IV in a hospital setting.  Some times the symptoms got better then returned or the meds had no affect at all.  Many women got their expanders removed -which always took care of the problem.  Yet, symptoms returned when a new expander was eventually implanted.

I began to wonder if any of these women ever thought to ask for a different BRAND of expander for the next round.  After all, I did not have this issue with my previous expanders.  But they were a different brand and, I assume, made from a different material.  I’ve asked my surgeon what brand expander he used  and will do some research too see if I can determine what may be causing these symptoms.

Someone else had said that her symptoms got worse throughout the day.  So do mine.  Why is it less red and owie in the morning?  Then it dawned on me… it’s allergy season in Georgia.  I’ve been taking a Benedryl every night now instead of just when I need some help sleeping.  Aha!!  More support for the theory that I may be sensitive to the expander itself.

So I took a Benedryl pill this afternoon to see if it relieved any of my symptoms.  The redness is still there, but much of the pain went away -thank God!  Unfortunately, I also spent the afternoon all sleepy.

While I was at the doc’s office I had him ultrasound the area.  He did see “something there” in the areas that are most painful but insists its not cancer cuz “cancer doesn’t hurt.”  He is assuming its scar tissue.

Hmm.  I reminded him that MY cancer did hurt.  That’s how I found it – both times.  The tumors were sore and downright hurt when I poked at them.  I do not have the same confidence my doctor has about these sore areas.  After all, the last time I had clear margins it was about three months later that Larry the lump came back -bigger than the original.  It’s been a little over two months now since my last “clear margins” news.  It’s only logical to assume if there were any cells left, they would be big enough to see and feel by now.

From July of last year. His recurrence

And one of the sore spots is exactly where Larry took up residence the last two times.  Just sayin doc.

But I’ve decided not to stress out about it.  The expander is coming out and I asked the doc to take everything else too.  Take ALL the tissue.  Take the nipple.  Take the scar tissue,  Make me flat.  I no longer care what I look like.  I just want this GONE.  I actually WANT to do the radiation as I know it’s successful in killing off any residual cancer stem cells.

So I’m scheduled for surgery next Friday to remove the expander.  Yeah -another surgery.  Sigh.  But at this point I’m looking forward to it to relive this pain and finally make a move in the right direction to recovery (in other words towards radiation).

Actually – the sweet nurse at the breast clinic just performed some magic and got me into the OR this Tuesday instead.  She had called to confirm my Friday surgery when I told her about the pain I was having.  I told her that I was happy to suck it up and deal with it if the doc felt it wasn’t causing any further damage.  I know he is super busy and didn’t want to make his schedule even worse.

She called me back later that afternoon and told me that she re-arranged things so I could get in to the hospital earlier.  Bless her heart!  So Tuesday, May 9th will mark my 7th surgery for the year.  That will be 11 total surgeries since this started last year.  And if all goes well, there will be at least 2-3 more by the time this is all behind me.

Ahhh…all behind me.  I can’t wait to say those words for reals.  Please God?

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