Deported

For awhile.

 

Today was deportation day.

Not in a crackdown on illegal aliens, but a crackdown of another sort.

Since my heart has shown “no improvement” over the last 4 months, I am officially off chemo.

Done with importing un-desirables who suck up all the resources (and nine times out of ten leave the area worse off than they found it), that little super highway is shut down, obliterated, gone.  A fence is constructed and baby, it’s live fire.  No prisoners.

The actual deportation is 30 minutes long tops, usually done by the surgeon who placed it, an easy in/out procedure, little pain.

Uh-huh.

Medical jargon translation in my world of treatment:  Will take at least an hour and frankly, you better plan on an ER visit or two out of this.  First and third year interns are performing the surgery without supervision, NOT a real surgeon.  And, since it doesn’t really hurt, we probably won’t numb you very well, so you’ll feel pretty much everything.  Don’t be such a baby!

This is how the surgery is supposed to go.  I watched it and was prepared.  Even, might I say, looking forward to it?

Just a few differences. True to jargon, interns performed the surgery.  My port, placed by a real surgeon (who is deployed to the desert), was sutured into the tissue. The two interns yanked on it half a dozen times before discovering, um, we can’t just pull it out?  Have you seen any sewn in like this?  Who put it in?  How did he get that suture in there on the bottom?  And the conversation flowed over my breast.  The only thing missing was a little wine and some cheese.

And the numbing thing? Didn’t happen.  You’d think they purchased the meds right out of their Xbox funds.  Three little shots.  Great for skin, not so much for deeper.

Each yank tore a little tissue inside.  (Gross I know!  Try laying still for it!)

Much cussing ensued.

Third year intern took over at the 60 minute mark because strangely ”the scar tissue was robust" and “fighting” them. What the hell does that mean? Lots of pulling, scraping, cutting, and yes more cussing. 

Though I’ll be honest, that was my biggest contribution.

Well, besides suggesting several times they go get a real doctor. 

Each time they assured me “almost done.”

Uh huh.

Medical jargon translation in my world of treatment:  Listen here guinea pig.  You’re done when we say you’re done.  Suck it up.  And stop saying you can feel it!  We know you can’t!!

At 90 minutes the original incision (from placement) was twice the size, and sutures began.  I couldn’t feel those.

Much.

Fifteen minutes to sew internal/external stitches, a little glue, and I am officially de-ported!

Sore and bruised, but back in the land of the living.

The alien is ejected.  The hole to the superhighway is officially CLOSED.

Deportation Day was, in the end, a success.

Medical jargon translation in my world of treatment:  Barring infection, suture failure, or general wonkiness, you will probably be ok.

For awhile.

19,725 views 25 replies
Reply #1 Top

Oh yes, I know the video is gross..but it went so well!

Reply #2 Top

Little sister, you continue to amaze.  I, because of my former status, get a little more attention from the docs when I complain, but I think that secretly they keep score and I have to pay in the end for any small victory I can attain.  So what is the deal now, heart is too weak to poison you anymore so the heart gets a rest...but what about the cancer?  Please tell me that you are clean...at least for now.  You remain in our thoughts and prayers.  

I don't know if you caught the post, but Sabrina is having some serious health issues again, this time could be end game but maybe not real soon.  If you need it, PM me and I'll send ya phone and email info.  

Thanks for posting this.  I see ya on FB sometimes but these articles are so much more informative and you do inspire.  Thanks, kid...love ya.

Reply #3 Top

Didn't know about Sabrina.  I don't follow her blog too often.  Been busy.  I have her #.  Thanks for the heads up!

Quoting Big, reply 3
So what is the deal now, heart is too weak to poison you anymore so the heart gets a rest...but what about the cancer? Please tell me that you are clean...at least for now.

I am off chemo because of the heart.  I only lacked 3 months, or 3 treatments..so I got most of'em.

Honestly I don't know if the cancer is "gone."  My Onc refuses to give me a PET scan, or any type scan.  Even though I am treated at a military facility, and they have a PET scan UPSTAIRS, and it literally costs them next to nothing to turn that sucker on....He doesn't believe in them.  Says they get too many "false positives."  (Bunk according to an Oncologist I spoke with down town.)

I of course asked for a second opinion from a civilian...and wouldn't you know it?  I got a fluke civilian Onc who ALSO doesn't believe in scans.  He literally patted me on the head and said, "Hon. You don't want to know."

I almost punched him in the face.

There seems to be some disagreement about my stage and therefore whether I get a scan or not.  The tumor board says I'm a 2 because there was cancer in 4 of my lymph nodes, but only a little bit (micromets) in two of them.

The Onc, breast surgeon, and radiologist all staged me a 3 because of the 4 positive nodes.  Also had significant lymph vascular invasion (LVI) which basically means my tumor set up its own blood supply so it could ship cancer cells all over my body.

STill the Onc did some back peddling after the tumor board.  Though the Surgeon and Rads guys still say I'm a 3.

The fact is, I wouldn't let them take more than 4 nodes.  So not getting a scan is payback for that decision.  They pretty much say as much every time I bring it up..."Well you know...if you'd let us take your axilla, and there was more cancer in the nodes, even micro, then you'd be authorized a scan."

Except of course there is no such policy/authorization (We've checked, had patient advocates check too).  It's just how they feel.  Plenty of women at lesser stages than me get PETs.

Ok, so why don't I just shell out the $5-13,000 to get one?

I may, eventually.  Right now though I'm too pissed off.  We pay insurance premiums, co-pays, yadda yadda, and the insurance comp. says NO PROBLEM..they'll pay for a PET off base...just have the Dr order it.

The Doc refuses. 

Ya know what?  If it was his wife...I'd bet she'd had 3 PET scans by now.

For some strange reason, when I speak to other Oncs and ask if they'd give me a PET they all say YES!  But when I tell them my Onc refuses, they backpeddle and say.....well, blah blah blah.

It's like some unwritten code that they support each other AGAINST patients.  At least all the Docs in my HMO.

Gah!

 

Reply #4 Top

You don't want to Know???  They should be careful what they say to former military personnel who have been trained to handle weapons and have nothing left to loose.  We will be rooting and praying and burning incense and sacrificing chickens and...well...you get the picture.

Reply #5 Top

I'm saddened, embarrassed and ashamed for my profession.  What pukes.

If cosmic justice exists, you're cured.  And I pray that is so.

Reply #6 Top

Quoting Daiwa, reply 5
I'm saddened, embarrassed and ashamed for my profession. What pukes.
If cosmic justice exists, you're cured. And I pray that is so.

I don't know that it is a medical profession quirk D.  I think most of the problem stems from my personality, military officer ego (they don't ever hear the word "No" but they heard it plenty from me), and unclear military policy which leaves too much open to interpretation..and also means they can institute some good ol'fashioned pay back for people they don't like.

Oh well.

:thumbsdown:

 

 

Reply #7 Top

Quoting Big, reply 4
You don't want to Know??? They should be careful what they say to former military personnel who have been trained to handle weapons and have nothing left to loose.

WHAT YOU SAID! }:)

Reply #8 Top

I wanted to PM ya but I can't figure it out any more!  Sabrina was on Blogster.com under a few different names, you know how the kid is, she developed a few disputes with some of the charter members and got banned.  Then she came back under a different name and got into another flame war and finally got banned again.  One of the monitors has allowed her to post a few things under anonymous.  The last year or so has been consumed with the flaming, she hasn't really posted much beyond that.  Let's see...she was Evillittlepuke machine...I don't remember the others.  I talked to her the other day, she is supposed to get some more results and information on the 3rd, I think.  Boyo...I know and love some tough broads.

Reply #9 Top

I was a medical officer in the Navy, so I understand how CF'd highly bureaucratized medicine is.  I fear your experience will be the norm for everyone soon.  Which, among other things, is heartbreaking.

Reply #10 Top

Quoting Big, reply 8
Boyo...I know and love some tough broads

Back at ya!

Quoting Big, reply 8
I talked to her the other day, she is supposed to get some more results and information on the 3rd, I think.

Ok..thanks!

 

 

Reply #11 Top

Quoting Daiwa, reply 9
I was a medical officer in the Navy, so I understand how CF'd highly bureaucratized medicine is. I fear your experience will be the norm for everyone soon.

Ah, so you understand EXACTLY what I'm talking about.....I've always found military health care frustrating.  Once this is all done, we may change our Insurance policy so we have a little more say in treatment.

Reply #12 Top

Quoting Tova7, reply 11
Ah, so you understand EXACTLY what I'm talking about

'Fraid so.

Reply #13 Top

Tova, I see you haven't posted in a while, I DO HOPE AND PRAY THAT YOU ARE OK.

Been trying to find you on facebook, but I must be spelling your name wrong.  I am Sabrina McMullen on there now, they don't allow pen names so I think the little-whip acct is dead because of that.

Gonna hit your local phone book to see if I can find you again.  I have some news that I know you'll be happy to hear.  Praise the Lord!

xoxoxoxo

S.

Reply #14 Top

Her silence leaves me anxious.  Hopefully, there are just much more important things than JU & I'm overreacting.

Reply #15 Top

Tova posts almost daily on Facebook and seems to be very well and active.

Reply #16 Top

Thanks for that heads up, BFD.  Great news.  Not on FB here, so let her know her JU friends are thinking of her.

Reply #17 Top

Thanks D!  I'm not dead yet! lol  Having fun with the warm weather...have been re-doing my flowerbeds, etc....one more surgery in Texas in July and then hopefully, that is all...

 

I'm working on an article for JU, one in my head anyway....lots to share :)

More later!

T

Reply #18 Top

Attagirl!

Reply #19 Top

Sorry I missed this Tova.  Thanks to BFD for making it pop up again.

 

My mother had a lung removed 3 years ago.  And she JUST had her port removed.  She has shown no sign of the cancer since the lung was removed, but doctors are always super careful these days.

I hope the same can be said in your case.  Best to get rid of those foreign objects!

Reply #20 Top

Doc,

Good to see ya.  Was wondering if you were still around.  Glad your mother's lung cancer is in remission!  That's great news.

My med. team wanted me to keep the port FIVE years.  A certain nurse, who I won't name, took GREAT satisfaction in telling me that every time I mentioned a problem with it. 

In this whole ordeal, one of the things I learned hard and fast is this.....too often the medical team forgot this is MY body, my disease, I have to live with the consequences of their treatment.  Therefore THEY don't get to decide how long I keep my port, how much heart damage I must suffer before calling it quits...and a bunch of other "standard" practice type things I wasn't on board with.

I have to live with the consequences, so I should be making the decisions I'm capable (ie, educated enough about...and I can't tell you how much I've read..professional journals, clinical trials, etc....in a very technical term I've read GOBS!) to make.

Of course I've "paid" for taking charge of my care and "bucking" the standard practices by not getting scans (still have never had a PET)...and a myriad other ways they can subtly stick it to me...but oh well.  Such is my life!

I'm active, and the port was uncomfortable....and frankly, I just want to move on with whatever life I have left without worrying about it getting hit, etc.

So out it came.

Couldn't be happier:grin:

Reply #21 Top

I identify with your self-education on your own disease.  MC has been battling Parkinson's for years and she,too, has studied it.  Seems that a lot of the time she is better informed than the medics who are charged with her care.  Keep fighting the good fight, sweetheart, you are a beacon and great example.  Thanks for being here.   Heeeheeeheee....green side of the grass....

Reply #22 Top

Thanks BFD...I think I read a green side of the grass reference from you or one of my other FB friends....I stole it, made it my own....

Reply #23 Top

I think the trend, with instant access on the internet, is as you and MC have done.  We have all probably seen the Lou Gehrig story - when the doctors told you as little as they could get away with.  Some probably still try that route, but when you can do your own research, you do not need sugar coatings.  just the facts.  And then with that, you make the decision that is best for you.

As you said, it is your body to live with and your life to live it with.

Reply #24 Top

What country was this in and how come you couldn't get a real doctor or proper anesthesia?

Reply #25 Top

Taltamir,

It is in America, at a military facility.  Military hospitals are essentially mini-socialized medicine scenarios.  Bureaucrats decide more often than not (military and civilian) what treatments I can get, and the ones I can't..regardless of what the medical field may have to say on the topic.  Which is why even though I have Stage 3 cancer, and it traveled outside my tumor into my lymph system....I've never had any PET or other scans (except an MRI).   

In this particular instance, I was at a training hospital.  The residents were stingy with the pain killer because they were inexperienced and because of the rank structure involved, likely intimidated about asking for more.