The Fear

I loathe rushing around, I really do.  Had the Echocardiogram today.  This afternoon I was sitting in my office and Abigail was talking to me and I suddenly realize what's happening... something is in my left hand frozen in mid air, my right hand is on my computer and I'm bouncing my leg fast and furiously; looking at her with wide eyes.  I stop.  Realization.  It's here, the anxiety is here again.   Abigail understood, "how could you not be?"  Shed some tears in secret at work.   Yes, secret, don't say it's okay to share it because if I did I would completely lose it.  I have really infectious tears, then others would cry, we'd all be crying and then our eyelids would get swollen and faces blotchy.  I would not recover.

Instead I went out to dinner with Abigail, Indian food one of my favorites.  It was a pleasant respite.  And then I cried off and on all the way home.

Fear.  Fear of the unknown.  Great gobs of fear of chemo and all of it's possibilities, of ports, of my diagnosis, of my future for the next entire year.

Tonight, just tonight... I'm afraid and feeling vulnerable.  As I write this tears are squirting out of my eyes.  I'm tired.  I don't want to do this.

"I must not fear.  Fear is the mind-killer.  Fear is the little-death that brings total obliteration.  I will face my fear.  I will permit it to pass over me and through me.  And when it has gone past I will turn the inner eye to see its path.  Where the fear has gone there will be nothing.  Only I will remain."

Oh, Frank, if only I were a Bene-Gesserit.

Blazing Through Darkness

I stole that "Blazing Through Darkness" from one of my favorite John Berryman poems Op. post. no. 12.  Finally, I get to use it!

Doctor visit over and here's the news:  The PET scan came back clear.  This came with a caution that it didn't mean there weren't cells somewhere that were replicating as we speak, but the chemo should take care of that.  Huge, anxious-ridden load gone!  I can breathe again.

Next we will be putting in a port for the chemo, electrocardiogram, something else I'm forgetting; and  I have to do these before we even start the chemo that is slated for next Friday.  It will be a busy week.  I'll be on Cytoxin, Adriamycin, and one other that also escapes me right now, but is taken at the same time as the Cytoxin.  There are a myriad of other companion meds as well but those are the big ones.  Schneikies, this is so weird.  Have I mentioned how freakin' scary I think chemo is?  Only totally.  Wish my doctor could have used a Jedi mind trick on me so I could remember all this stuff but I do keep an organized notebook to help.  The hospital will just call me to do stuff and and I will comply.

I will lose my hair.  She wrote a prescription for a "cranial prosthesis," a wig.  "Dispense 1" Cute, huh?  I'm looking forward to this, why you might ask.  Well, I remember actresses Persis Khambatta, and Sigourney Weaver saying about shaving their heads for roles how sensitive the scalp is and how incredibly good it felt to run their hands over their bald heads.  Yeah, I want that!  Won't be forever and I'm wishing and hoping my hair comes back in curly!

Dear Friends/Co-workers:  Make sure I'm drinking a lot of water.  Very important!  This is how these poisons are excreted from the body and I suck at Water 101.  I try... but I suck.  Must do better starting now!  Gonna get a big ol' water receptacle, gonna fill it up and drink it!

David and I had lunch at the Iron Rabbit before leaving the Olympia area, my new favorite restaurant, we had lamb burgers.  I'm in love with this restaurant.  They have a tartar sauce that has an unidentifiable ingredient that makes it so different from all others!  Stop it, it's deeply meaningful, and important because another week and  I won't want to eat!

Dear David,
"You and I, we're like 4 year olds
We want to know why and how come about everything
We want to reveal ourselves at will and speak our minds
And never talk small
And be intuitive
And question mightily and find god."

Dear Alanis, I found my "like-minded companion."

Surgery Day

Step By Step (you have time to back out!)

Surgery day started at home with a Lidocaine cream to the right nipple... this is for the nuclear imaging later in the morning.  The staff at CMBC gave me a tip to use that cream at home and use saran wrap over.  If you ever have to do this be generous with that cream!

Alright then-  starting the day off in Tacoma at 0645 at the Carol M Breast Center... for a wire guideline for surgery.  I had the same team who did the ultrasound and biopsy.  It didn't take too long and before I left the facility I put even more of the Lidocaine cream on.  Off to TG and nuclear imaging for the next step.  Remember when I said you might want to wear a mouth guard?  That would be now...

The procedure at nuclear imaging consists of radioactive injections into... that's right... the nipple.  <shudder>   Three of them in fact.  BIG needles.  I have to say my generous application of that cream helped with pain immensely.  Yes, there was some discomfort, but it's more the texture and thought of the idea of the procedure that causes more cringe factor than the actual pain.  The purpose of this procedure is to visualize the sentinel and other nodes and follow their path for inspection during surgery.

Now we wait.

During this time I was admitted to my room by a very nice aide.  I did send David who was with me this whole time... away.  Not everyone does this and it's a personal preference.  I needed my own space to cope in my own way; and not worry about him and how he was coping.  He could have handled it, I just needed to do it this way.  I went through a lengthy admitting process with an RN which was interrupted by a call from nuclear imaging to now take some pictures.

Somewhere in the 1100 hour I saw my surgeon who wrinkled her nose at my anemia (runs in my family, we're all anemic, even the males) and also my low Vitamin D level... something to work on later.  She showed me the node pictures we will be checking on.  Then I saw the anesthesiologist who did his own lengthy admit.  I dutifully notified him I come out of anesthesia pretty slowly and vomit abundantly, or in this case retch energetically!  Most medications for nausea are also sedative, so... what ya gonna do?  Nothing.  Need to add here, even though lots of folks are taking histories and questions are repeated, it's important because going through this 3 and 4 times, it was that fourth time that I remembered things I had forgotten.  

I was in and out of bed a lot due to physical discomfort and anxiety.  Finally it came time to put the IV in, and I fussed at the nurse when she wanted to give me a Heparin shot.  Are you kidding?  You take me off my regular meds for a week because they thin the blood just so you can now give me Heparin?  The medical world is a curious place.  I have a guess at the reason but... whatever.

1315 and time for the surgery (as scheduled) and off I go.  It was at this time that I realized TG was uniquely designed in kind of a mirror fashion so family and others can roam the halls on one side, but there's a secret back side that patients can be transported through without a lot of contact with others, or very few others.  Ingenious!  Secret things go on in those back hallways I'm sure of it!  They rolled me into the operation room where my doctor was talking with her team on one side of room and the anesthesiologist and a couple of others were on the opposite side.  Moving from one bed to another is no small task when hobbled with an IV in your hand and your arthritis is flaring up because you haven't had your meds for a week!  I made it and made sure since I was going to be on this table for awhile and wanted to actually be able to walk later, that I was comfortable and various body parts were supported.  Two pillows under the knees, one under the heels, and the very kind anesthesiologist anticipated and slid one under the small of my back.  Ahhh... 

Okay then, I'm ready.  Injection (your going to start getting slee... and... Zzzz....

I hear David, then see him.  Someone else is in the room talking to him.  This whole section is really pretty fuzzy except that as soon as they stood me up to get dressed; then came the retching, again and again.  We somehow made it down to the car... retching... and off we go.  I wanted to go home following the surgery but it became apparent this was not a good idea.  We ended up staying at his place in Fife.  I had a dark room with air conditioning (hot day) sleeping away with intervals of awake and retching.  A little water, retching.  I woke up later that night and had toast I think, more water and back to bed, I was staring into space anyway.  Retching, and out.

In the morning I just wanted to go home as soon as possible.  No more retching so off we went.  The next 3 days were a blur too; the pain was not too awfully bad, I only did half doses of pain meds during the day and whole dose at night for 3 days.  The swelling of the whole upper arm and breast was terrible, of course had to keep incision sites clean and dressed.  Had a little trouble with one but it has finally cleared up.  There was discomfort for the whole 2 weeks and even first week back at work, but acetaminophen handled it pretty well.  

David shared some things with me the doctor had told him that I had zero memory of.  That first week post-op was emotional and I forgot how stupid one gets following surgery.  Words just did not come to me.  David had a good time trying to figure out what the "thing" was... which applied to everything!  It was like a little game!  We laughed fairly often about that.  My kitty Os was a concerned companion as well, ever at his mama's side.

I had the discussion with David about this being a situation I was in the middle of and he was experiencing a facet of it that I couldn't really help him with.  His experience was as unique as mine, but different, and he needed to talk to his friends/support people.  He has several male friends to do this with, women as well, and I could only encourage that.  He was very strong and didn't overreact to everything I blurted out... which I'm sure was some scary stuff about mortality and that general theme.  We both have a heavy road ahead of us.  He is smart, funny, a wonderful care giver, and oh so easy on these eyes!

A week later my post-op visit was a downer.  They found more involvement than expected and all of my lymph nodes were dark hard little rocks.  All were removed.  Surrounding tissue was removed and didn't look good, biopsies elsewhere didn't look good.  Then there was something about "margins" and they have to go back in, and do more surgery.  "Whack 'em off" I said.  "Lets do the surgery now!  They served their purpose, take 'em, I'm totally okay with that, take 'em."  Alas, diagnosed at "at least Stage 3" we need to get the chemo started ASAP to treat systemically... since the likelihood it has moved outside of the breast is pretty high.  We worked on a referral to switch services to the Olympia area to ease that path for me for the oncologist, the chemo, and the radiation.  Full meal deal.  

I want to take this moment to say in spite of all the bad news all along the way that my doctor/surgeon is really a wonderful person.  Very direct and I appreciate that.  At every step along the way from nurses to techs it was "oh wait... your doctor ----'s patient.  She likes things done a particular way."  This sometimes seemed to be with a bit of genuine fear (that puzzled me at first, then amused me), but it was more often with respect.  The admitting RN said "you don't just have a good doctor, you have a great one."  From my doctor's point of view when I told her all of this, simply said, "it just about patient care, that's all."  Humble in all her awesomeness!  

Next Up:  The Oncologist

In The Beginning...

Tell Your Story

Saw that, heard that.  Okay.  This is a story about my right breast and recent diagnosis of Invasive Ductal Carcinoma. The three words you don't want to hear that will change your life forever.  Wait, shouldn't there be like a prologue or something?  Something about my very first mammogram in December of '94 when the radiologist said "there's a very large mass in your right breast right up against your chest wall."  I'm not kidding- I giggled, then I laughed.  Really.  It's immaterial but there were other things going on in my life that kept smacking me in the head and this was a final blow.  I said "of course there is."  At that time they prepared you for the worst possible scenario and scare the heck out of you.  My sister came up to take care of me just in case.  Oh the drama.  What was removed was benign.  Moving on.

Over the last 4 years there have been, again in the right breast, calcifications and a Stereotactic Biopsy, boy, that was fun!  A lump that vanished, and then, here it comes... in April of this year I woke up to a massively painful breast!  I mean I couldn't stand my shirt, or my own hand to even touch!  In hindsight this was the first signal that something was very wrong.  I called my doctor "I think I have mastitis!!!" Went in and yes, looked like mastitis, went on antibiotics and felt somewhat better a couple of days later.  My yearly doctor visit was two weeks later and though I hadn't noticed any lingering discomfort myself, when she went to examine my breast... let's just say it was lift-off, right off the table!  She saw a blush on my breast and the oddest thing... the areola was fading in color.  Get thee to a mammogram!

So fuck that.  I couldn't do it.  Too much pain.  My doc sent me instead to a breast specialist in Tacoma who also happens to be a breast surgeon.  After a lengthy history she still needed a diagnostic mammogram and I had to bite the bullet!  It was the first time I had been to the Carol Milgard Breast Center.  It's like a little spa, warm reassuring staff, women running around in white robes.  Coffee, cocoa, tea.  When I went in I held both my tech's hands in mine and looked steadily into her eyes (demanding direct attention).  "My right breast is really painful, I'm really scared.  I need you to take your time and be oh so gentle with me."  I could not have asked for a more compassionate person to take care of me.  She was amusing too, repeatedly saying throughout "comme ci, comme ca."

They found "something."  This was followed up with an immediate ultrasound.  Yep, something.  

Next: another doctor visit to go over those results and then schedule a biopsy.

The Biopsy

Mental Flow  (somehow this got lost so added it here)

I started my blog last night because I hadn't slept more than 2 hours collectively on Sunday and Monday nights.  I was wound the last 3 days, hyper.  Possibly hit some level of anxiety because during the days I've been having palpitations... that I shouldn't be based on the very slim use of caffeine in my life currently, plus I take a beta-blocker so... what the...  Anyway, my mind has been awake and making huge leaps in thought.  I decided it was time to write the story... and as a friend said- "Anything that quiets the chatter is way good."  It just flowed out, a good portion of this one too.  Oh, did I mention I slept like a baby last night?  'nuff said.

I should have mentioned that during that first visit to the specialist, my doctor didn't really think there was going to be anything wrong.  I had breast pain and was told some women just have some breast pain.  True enough, I have even known some.  Going off caffeine and chocolate was first on the list and should make some difference.  I was okay with going off the chocolate, but coffee... tea... (grumble, grumble)  What I really liked about this doctor was her suggestion to add Vitamin E and Evening Primrose Oil to my daily regimen.  We also went through the "Breast Cancer Risk Assessment Tool" together that can be found at:  http:www.cancer.gov/bcrisktool/  I should add we did it 3 times because she was surprised I was at 18%, thought it higher than it should have been.  In the end we agreed it was probably ethnicity and prior biopsies. 

There I was back at the breast center having had the mammo and ultrasound; this time for the biopsy.  I had the same tech and doctor who did the ultrasound the week before.  As biopsies go it really wasn't too bad, the worst being the numbing fluid going in and that lasts... oh... maybe 2 seconds.  This is a fairly quick procedure.  Pac-Man taking bites.  The tech was a beautiful young woman whose mom went through breast cancer surgery and treatment five years ago and had the same doctor I did.  We were in agreement there should be music in the room for this procedure!  Distraction can be a useful tool sometimes.  The surprise came at the end when I squirted blood out everywhere as they removed the biopsy tube.  Warm, red shower... on everyone!  Most unexpected! My lovely tech had to apply pressure for 15 minutes.  The result of that was a hematoma, or as I heard a doctor once say many years ago- "a hema-tomato."  It lasted right up to the surgery.

Back to the specialist for results:  Invasive Ductal Carcinoma.  They had biopsied the tumor and surrounding tissue- all came back positive.  Okay.  Alright.  I tried my very best to take a breath/or/not hyperventilate, I can't remember which it was, possibly both.  I found myself in this strange altered state the rest of the day, like I was under water... kind of sensorily blunted.  

The Plan:  next stop surgery and then radiation.  "We're going to take the tumor, some of surrounding tissue; we're also going to do some nuclear imaging of the sentinel and other lymph nodes.  We'll do more biopsies on everything we remove.  You may or may not need chemo, you'll see an Oncologist who will determine that.  Looks like Stage 2 right now."  Folks- I hesitate to tell you what that nuclear imaging consists of; but oh no... I will not spare you when the time comes.  You might want to wear a mouth guard though.  Tacoma to Aberdeen with tears off and on.  Schneikies!

I want to add here that such a scary diagnosis brings up a lot of fears- how am I going to deal with this and work?  Am I going to lose my job?  Do I have enough sick time?  How on earth and I going to figure out some kind of income while this is happening?  Will I go to debtors prison or just plain prison (they don't have debtors prisons anymore do they?  I don't think so... still... the thought was there)  I'm going to paying through the nose the rest of my life.  I have said many times in my life to many different groups- most of us are one or two paychecks away from financial disaster.  Tragic to know what you're facing and have to think about this stuff.  Right now this very minute I'm looking at thousands of dollars... okay, let's NOT think about that.  Give me the forms I'll sign them.  What else can you do?  Times have changed and outcomes/survival rates are improved; with that in mind the very biggest fear is still... that it's completely possible that there won't even be much of a future.  I know, I know, don't be a Debbie Downer... I'm not focused on that, really.  Alas, it is a possibility.  Okay, let's NOT think about that one either!

I have to say that when I told the management team where I work what was happening they were nothing but completely supportive and wanted me to focus on getting healthy.  We'll figure it all out.  That is something.

Next up:  Surgery Day & Significant Others